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Old 03-31-2009, 09:34 PM   #1
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The Eldercare Thread

I've been thinking for awhile about trying to get a discussion going in here on this topic, but haven't been quite sure how to go about it. Maybe since things are so quiet around here right now, and most of us are finding we have little to offer beyond 'Ulp...ohhh shit' concerning the economy which is obviously the leading political issue of the moment, this would be as good a time as any to give it a go. I'm afraid I don't have any provocative news story on the topic to kick off a discussion with though, so I was hoping our collective personal experiences with the topic would be enough to provide that. I'm guessing that many of us have at least had the experience of watching and perhaps helping our parents care for their own aging parents (and/or perhaps their siblings, aunts or uncles); that several of us have been or currently are at this same stage with our own parents; and that a couple of us have also had cause to worry now and then about what's going to happen to us as we get older, physically and maybe mentally weaker, and perhaps without much in the way of potential family support to tap into.




-- When you think in broad social and political terms about 'eldercare' as a system, what are some of the problems that come to mind? What do you feel your country and society do well, and do poorly, concerning the needs of elderly people and their caregivers? Are there forms of institutional care in too short supply, major changes you feel need to happen with existing institutional care, or needed reforms in social services networks providing support to elderly people living at home or with relatives? Are there problems with our general social attitudes about caring for the elderly in ways that go beyond what public and private services can realistically supply?

-- What have you learned from your own personal experiences with the topic? What were or are the most infuriating, most frightening, most draining--or most rewarding--aspects of your or your family's situation? Did or do you feel adequately supported in your efforts, both by family and friends and by relevant professionals? What do you really, really wish you'd known before you and your family got into this? How has all this affected your perspectives on caregiving, families, home and institutional care, and just in general the meaning and significance of aging?




I grew up without grandparents, aunts or uncles and my father died young, so this topic has only recently become of strong concern to me, when I became my mother's guardian after she was permanently brain-injured in a freak accident last year (she's in her early 70s and still otherwise in excellent health, so may very well continue to live in this state for many years to come). I have 4 siblings, and we mutually decided after some debate and discussion that it'd work best for me to take legal responsibility. Originally we'd hoped to care for her at home, but after a few months of initially necessary institutional care and several setbacks, it became clear that she simply required a higher level of care than we could adequately provide at home, particularly since we already have 3 young children. Given this backdrop, I'm overall 'pleased' with the care the private nursing home near us which she now lives in provides--most of the employees, despite their deplorably low wages, are kind, considerate and accountable folks; the therapy provided there (not something insurance would cover if she lived with us) is quite good; the food, while not particularly appealing, is nutritionally sound; they've been very reliable about calling me right away on the few occasions where medical problems cropped up; after many months of stressful arguing back and forth, I think we're finally approaching a psychiatric-medication regimen for her that keeps both the staff (she's now seldom 'combative'--most dreaded word in institutional eldercare) and me (she's no longer doped into zombie-ness, and shows slight but noticeable improvements in conversational skills) reasonably happy; and there certainly aren't any horror stories of oozing bedsores, filthy clothing and environs, or mysterious bruises to speak of. But grievances, yes, I've got those too...nursing home care is astronomically expensive (thank God we got her settled into a place before her own financial resources were exhausted); they simply don't have enough staff to provide her or any other 'cognitively challenged' patients with more than occasional social stimulation, so she spends far too much time sitting around fidgeting or staring blankly at TV programs she can't really comprehend; there are a few aides who slack off on ensuring she brushes her teeth and hair because they're too brusque and impatient to gain her cooperation; and I can tell they don't do a good job of discussing individual patients' unique conditions and needs with the aides, because I'm still often encountering situations where an aide will offhandedly refer to my mother's "Alzheimer's" and are clearly surprised at the 'news' when I wearily fire back, "She does not have Alzheimer's! She's a brain injury patient, she's much more alert than most Alzheimer's patients, she just has trouble comprehending what she sees and hears and responding appropriately..."

As for all the other eldercare hoops we've had to jump through along the way...man, were we naive at first about how to weigh and execute the needed legal decisions; the fact that you'll need a Rolodex-full of doctors' names to coordinate all the various healthcare aspects, because it's all so damn compartmentalized and no one does the coordinating for you; all the fights we'd need to get into with insurers over psychiatric medications and therapy provision; how anal-retentive nursing homes are about accepting (and keeping) patients who show even the slightest degree of 'combativeness'; and the occasional tensions with siblings who are thousands of miles removed from the situation but think they know best when it comes to, for instance, the medication regimen, and call to bellow at you about it when you're exhausted and emotionally stretched to the limit and just need sympathy and support (though mostly, we've collectively been very lucky in this regard; in fact my younger brother's going to move his family out here just for next year and serve as short-term guardian, so that we can go abroad). In theory, a good social worker can be an invaluable guide through this labyrinth; in practice, the few you initially come into contact with (like at the hospital when you're still in the feverish early days of dread and bewilderment) are often not very proactive, so you wind up figuring out much of this stuff the hard way, through trial and error and chance encounters with other patients' relatives who share their tips with you.

In the bigger picture, I think that as a society we haven't really come to terms yet with the reality that we're heading into a period where there are far more dependent elderly people than ever before, while at the same time other social circumstances have changed tremendously over the last several decades in ways that make it increasingly difficult for relatives to absorb the care burden themselves (smaller families, with fewer kids potentially available to help; geographically dispersed families; fewer homemakers, which in many situations can make adequate homecare impossible; less close-knit communities, meaning fewer friends, neighbors, fellow church members etc. willing to help out; better medical care, which paradoxically means more and more people living longer and longer in increasingly compromised conditions; and--while I suspect this one is often too readily pounced upon, as if the aforementioned were irrelevant--yes, probably also a declining emphasis within our culture on familial responsibility: that ready-or-not, want-it-or-not automatic sense of obligation to repay your parents for all the sacrifices and responsibility they once undertook for you to the best of your ability, to treat them as you would want to be treated in their situation). I'd be lying at this point if I described the experience of being my mother's guardian thus far (and I realize many families are shouldering such responsibilities far more intimately, at home) as "rewarding"; I think above all else because the parent I knew and loved for 37 years in truth effectively died last year, I don't have my siblings right here to share that reality with, and I have to plan for the future under the assumption that she might live on another couple decades like this for all I know. But at least it does mean something to me that she's not living isolated from all five of us, marooned someplace where there's never anyone around to trigger some recollection of who she is, who she knows, and who cares about her in a social sense. For that much I'm grateful, because I doubt I could bear that thought for long.
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Old 03-31-2009, 10:48 PM   #2
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yolland...wow, how timely. I'm going through this very thing right now with my mother. I have been to a certain extent for a few years, but let's just say for now that things have stepped up drastically in the past several months in terms of her health issues, and the level of care she needs, and will need in the very near future.

You've brought up so many excellent points that merit discussion. One of the major ones is the emotional impact on the caregivers/family members, and I've had a very draining day in that regard. When I have the time and the mental wherewithal to post coherently about it, I'll certainly do that, but for now, thanks for bringing up the topic, I'm very interested in reading the experiences and opinions of others.
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Old 03-31-2009, 11:19 PM   #3
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I dealt with this for many years with my (paternal) grandmother, who used to live with us for many years. She was diagnosed with Alzheimer's in the late 1990s, and remained living with us until 2006, although by then I was living away at law school. I think like with a lot of people, when it became completely impossible to have her at home, we put her in a nursing home.

There were some things that were helpful to us. A nurse came in 4x/week to give her a bath, and this was a free service provided by the province. I think that the nurses were paid by the Red Cross, but we got the service through the Alzheimer's Society and my grandmother's physician. This was a huge aid, without which she probably would have been in a home earlier. My Dad also went to work the afternoon/evening shift so that she would not be left home alone - this was necessary because she'd randomly turn the stove on to "cook", peel potatoes, let the dog out and forget about him, and so on. Therefore she was just not able to be home alone, although at least she never wandered around the neighbourhood. There was also tax relief for homecare providers, which my Mom took advantage of since she was in the highest income bracket. It made a pretty good difference, but it's one of the things that I think the feds should consider expanding in light of how many elderly we now have. The fact that my grandmother was also a low-income earner, she qualified for 100% free meds (except dispensing fees) and of course we have universal healthcare so that was never an issue.

Apart from the Alzheimer's, she also suffered from multiple minor strokes, and a major heart attack in 2004, which is pretty much what did her in physically, since she never fully recovered from it.

My parents kept her at home another couple of years but then it was really unbearable because she lost her sense of time, so she would get up at 2 am, 3 am, 4 am, bang her cane on the wall, and keep the whole house up. And that's tough when everyone has to be up at 6 or 7 am to go to work. She also would refuse to eat or drink on occasion, which lead to several trips to the hospital for re-hydration. She couldn't manage to dress herself, and just pretty much lost her interest in life in general it seems. I know that when I came to visit, it was really difficult with her, everybody's daily lives revolved around her, all of our plans, the fact we couldn't go out and have dinner as a family or go visit anyone at the same time because at least one person had to stay over to be with her, etc. It was taking over our lives to the point where my Mom said that we'd be as "crazy" as she was in her dementia. It may sound awful and cold, but a decade of living like this really takes a toll.

I have only the greatest respect for people in this position. It is incredibly hard and the sacrifices that people make are enormous. Nobody on the outside really understands this. Also watching this has only made me more in favour of human euthanasia. There is no way in hell I would want to end up that way, living for maybe 2 decades in a state where you are afraid and sad because you don't know anyone or anything anymore...I cannot imagine a fate that is worse. I long ago accepted that my grandmother is gone, what's left is just her body, and in that way you also go through a person's death twice in a sense. Having seen it, I hope to God that I die before deteriorating this way, it's simply unimaginable to me. My younger brother, who had to really live through all of this in person since he was still at home, told me to please shoot him in the head if he is diagnosed with Alzheimer's because he can't stand exposing anybody to it.

Anyway, just some thoughts...good thread.
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Old 04-01-2009, 12:22 AM   #4
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A family friend committed suicide after being diagnosed with early onset Alzheimer's, that sort of shocking one off emotional damage seems kinder to relatives than the alternative.
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Old 04-01-2009, 12:40 AM   #5
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I've got a family member who needs a diagnosis and then treatment/management plan, but none of us have a clue how to get such a willfully stubborn and defensive person assessed. I suspect there are possibly two issues which need a medical assessment, but all of it looks like such a very steep hill to climb over. Like VP, this thread is rather timely for me, as the situation is heading for escalation. I'm not even sure how to begin this, nor what we are even facing.
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Old 04-01-2009, 12:59 AM   #6
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As troubling as Alzheimers is, it's harder on the relatives. Those suffering from Alzheimers and Dementia don't really know they're afflicted. I'm happy that my grandmothers were able to live out their lives without the need for long term care, and my grandfathers are both headed down that path as well.
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Old 04-01-2009, 11:40 PM   #7
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^ I don't know about that; I do agree it's harder on the relatives (at least if the patient lives with them), but quite a few of the Alzheimer's/dementia patients where my mother lives--I think maybe especially the late-middle-stage ones(?)--often appear to me to be what anitram said...afraid and sad, or agitated. True, they probably have no idea why everything seems unfamiliar and indecipherable, but that doesn't mean they don't suffer from finding that it is. It can't be pleasant to be aware that people are trying to physically 'do stuff to you,' yet be unable to figure out what their intentions are.
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Originally Posted by Angela Harlem View Post
I've got a family member who needs a diagnosis and then treatment/management plan, but none of us have a clue how to get such a willfully stubborn and defensive person assessed.
There must be a geriatric services agency, or whatever they call it there, in your area where you could seek advice on ways to go about this, because it's such a common problem with elderly people. Unfortunately sometimes the stubbornness itself can be a symptom of cognitive-degeneration problems.
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Originally Posted by VintagePunk View Post
One of the major ones is the emotional impact on the caregivers/family members, and I've had a very draining day in that regard.
This was pretty much the entire latter half of my day today; I'm just now getting over the resulting pounding headache. Partly related to what I complained about above concerning lack of coordination between the various services...I'd made an appointment for my mother with a doctor who hadn't seen her before, and neither the driver for the nursing home's transport service which takes her to and from (it's not safe for me to take her myself in our car, since she can't be trusted to stay put), nor the various medical techs who do the lion's share of the poking, prodding, testing and questioning at the doctor's office had been informed in advance that she was brain-injured. And even though I always make sure to tell them myself as soon as I see them, often I can tell they have no idea what that means; I can see them doubtfully eyeballing her and thinking 'Huh, she looks pretty normal to me'--then they're all tense and looking at me like OMG is she always this way? 30 seconds later when she responds to a 'Raise your knee a sec for me, hon' by beaming and saying 'Me too!' without moving an inch, or angrily clutches their arm and snarls, 'It's...too...rhetorical' or something aphasic like that in response to an unpleasantly cold stethoscope. These are small things in the big picture, we've certainly had far worse days, but it makes what ought to be a pretty straightforward occasion nervewracking from beginning to end and I always drive away inwardly muttering, 'Christ, how hard can it be to inform your staff of one small but highly relevant piece of information about the patient at hand and make sure they recognize what it means?'
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There were some things that were helpful to us. A nurse came in 4x/week to give her a bath, and this was a free service provided by the province. I think that the nurses were paid by the Red Cross, but we got the service through the Alzheimer's Society and my grandmother's physician. This was a huge aid, without which she probably would have been in a home earlier...The fact that my grandmother was also a low-income earner, she qualified for 100% free meds (except dispensing fees) and of course we have universal healthcare so that was never an issue.
Lack of adequate homecare services in our area was certainly one reason why it just wasn't going to work for my mother to live with us. In theory there are always at least a handful of people locally available to provide the added self-care assists we'd need (except therapy); in practice I've heard dozens of horror stories about homecare workers going AWOL and it takes 3 weeks before the agency can locate a replacement. Well, we can't afford that; the level of direction and supervision she'd need in a home environment, unless almost continuously kept in restraints, simply wouldn't allow for those kinds of gaps.

And I don't even want to think about the savings if the psychiatric meds that enable her to focus and not react 5000 percent to everything were free.

That must have been tough on your brother, to have literally grown up with that for years on end. This was another issue for us too--the potential impact on our gradeschool-age kids of having a pretty active, but also pretty severely emotionally disturbed and cognitively disabled adult being continuously around whenever they were at home.
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Old 04-02-2009, 12:54 AM   #8
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this thread is timely and relevant for me as well. though i'm too exhausted to contribute tonight. i'm not in nearly the same place as some of the other posters in this thread, but i've gotten a very unpleasant taste of the future these past few days, and it's not pretty.

more from me later.

good luck to everyone.
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Old 04-02-2009, 04:34 AM   #9
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Quote:
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There must be a geriatric services agency, or whatever they call it there, in your area where you could seek advice on ways to go about this, because it's such a common problem with elderly people. Unfortunately sometimes the stubbornness itself can be a symptom of cognitive-degeneration problems.
There's a rather large mental health service in my area, thanks to a very neatly organised state health system. How good it is, I do not know, and for their aged services, I have no clue either. This is very new territory to me. I'd ring them in a second, but I have a couple of rather (seemingly) insurmountable hurdles in that the family member in question works in the hospital in my area that the mental and aged health teams work out of. She's worked at the hospital for a very long time, by an ironic fluke in the brain injury ward where a lot of dementia and alzheimer's patients also stay for various reasons, so she not only thinks she is an expert, but is highly suspicious of anyone below a doctor as she 'knows' and does see just how fast information (ie, gossip) flies, and that is before we get to her incredibly set opinion of all doctors, whether she has met them before or not.

I've spent weeks recently devouring google for just an idea of what is happening, but it is just so hard to get even a good likelihood. I'm not even sure anymore what we have labelled her with, symptom-wise, and what is there beyond doubt. And then the extent is another grey area. I'm aware these things take time and many assessments because it is just not something that can be tackled in one consultation. So we've essentially got a paranoid (perhaps to an extent with reason) woman, who works in a hospital that she would need to spend a lot of time in with facing this, she is denying even a suggestion that we need to get her investigated further, she had sudden and dramatic weight loss a while back which we managed to get her to a GP for, only to find there was nothing physically wrong - at least for things like cancer and other more instantly diagnosable problems, she is definitely depressed (it's painfully obviously the case) - but again without diagnosis or treatment, she is prone to aggression and outbursts on random people such as shop assistants, etc, she believes at times that we are all plotting and discussing her without her knowledge, she is bitter and confrontational, she has majorly disrupted sleep, she creates arguments and stories at random times, she does fabricate ridiculous cover ups for things like her sleep patterns, her weight loss, her irritability, etc... I could go on and on. She functions well, it seems, at work, and is able to get herself around the place with no problems. So she is not disorientated and has no trouble remembering her immediate family. She doesn't answer questions or insert random out of place things in the wrong context when talking, either. Still, the downward slide is definitely there. I don't have a clue how to get actual help. I know I won't be able to get any significant help from a GP or referral without her attendance, and due to strict confidentiality laws in regard to the health system won't get very far with me doing the legwork without her. She's nowhere near having someone else assigned guardianship, so that is not an option.

I know I need to make contact and get advice, and take it from there. I'm sure this is a very common occurrence and there are steps. Maybe I'm putting off the inevitable because the battle ahead is going to be long and difficult. I'm utterly lost. Thanks for the thread to let it all out in, yolland.
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Old 04-02-2009, 10:27 AM   #10
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for all of you dealing with this.
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Old 04-02-2009, 12:00 PM   #11
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Great topic yolland!

I am in the age group, early fifties and I have aging parents, to take care of. The U.S. has good services for senior citizens, if the families can afford it. The problem is that this care can be financially out of reach for most working class families. Especially, with the cost of health insurance. Medicare is basically a joke, since it does not cover all health expenses. Forcing those who are most vulnerable and on fixed income, to spend even more for added, private insurance.

This puts an added burden on the middle age. Who have parents, children and possibly grand children to care for. Our incomes do not meet our expenses. And we are stressed beyond the limit. Causing us to let go of what should be a good time in our lives and making great sacrifice to care for our extended families. I don't mind, of course. I love my mom. But, I would like for her to have better and more affordable health care. Especially with her medications. You wouldn't believe how expensive they are.
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Old 04-02-2009, 03:04 PM   #12
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Today was even more draining than yesterday, but I think that typing this out might be therapeutic for me, in a way. I’ll try not to veer too much into Zoo Confessional territory with this, but if I do, it’s because right now I’m engaged in dealing with the emotional impact of all of this, and coming to terms with the situation.

My family of origin consists of my mom, my sister, and my brother. My dad passed away suddenly 11 years ago - Easter Sunday, in fact. I was a late-in-life child; my brother and sister were in and nearing their teens by the time I was born. My sister and I have always lived in the same city as my mom. My brother has moved to within two hours away, but moved back here, ostensibly to “help out” not long after my dad died.

After being very healthy all her life, my mom developed some chronic issues in 2001. She was hospitalized and diagnosed with arrhythmia and congestive heart failure. She was put on a regimen of medication, and then that was followed by many visits to her family doctor, several specialists, and various tests and procedures. She doesn’t drive, so I was the one who started out taking her, and she wanted me to come in to the examining room with her for all appointments – her reasoning being that I remembered details better than she did, and I could inform the various doctors as to what was going on better than she could. She’s also hard of hearing, wears hearing aids, and sometimes doesn’t catch everything that doctors say, and they seem to make little effort to speak up, even when informed of this. This goes back to what yolland spoke of, regarding the difficulty in coordinating the care of a patient – I’m very familiar with that, I’ve taken on the role of being my mom’s “medical coordinator” - and I empathize. Despite the sharing of files and test results between doctors, there are still myriad detailed questions that they ask at each visit. We got into a fairly settled routine with all this, though. There were some ups and downs, but her condition mostly proved to be quite manageable.

There was relative calmness until last year. In the spring, she complained of having a sore shoulder and her doctor attributed it to arthritis, told her to take Tylenol, and to move it as much as she could. I could see that it wasn’t improving and often mentioned it to her, but she insisted that it was, and specifically directed me not to say anything more to the doctor about it. Then in late summer, after some routine testing prior to oral surgery, she was diagnosed with Type 2 diabetes. She was put on a low dose pill, we attended diabetes health education seminars, and were just getting into the swing of things with that, when her shoulder became much worse. When I mentioned it to her doctor at the next visit, he ordered an ultrasound. The radiologist saw an unusual mass and ordered an MRI to examine it further. In mid-December, her family doctor called me with the results of the MRI – it was malignant. He said the next step was to get a biopsy done, and then she would be treated at the regional cancer clinic, about 45 minutes away from here. During this time – I’d say from late fall – she was in fairly intense pain and not sleeping well because of it, so she seemed more absent-minded then usual. I thought that given the circumstances, this was understandable, pain and fatigue can cause anyone not to be at their cognitive best. The first time I became truly alarmed about her memory was in early December, when she was clearly confused about a medication she’d been on for years, something she should have readily known. At the time though, dealing with the cancer was the priority.

By that time, we were caught in holiday limbo, and nothing was done for a couple of weeks. Being left hanging is the worst, and the holidays were hellish, to say the least. When we got into the clinic in early January, the oncologist explained that it’s unusual for cancer to just appear in the shoulder, it generally spreads from another area, and through testing he found that she also has breast cancer. The wonderful thing about Ontario cancer clinics in general, and this one specifically, is that they’re self-contained, and have most of the services that a patient could need, and for the ones they don’t have, they’re associated with hospitals that can get patients in for testing/surgeries very quickly. Fortunately, tests revealed that the form of cancer she has is one that is hormone based, and that the treatment consists of a hormone blocking medication and a round of radiation therapy. We were told while not a cure, the outcome is quite positive, that this treatment can keep the cancer at bay for years in many people. Since then, she’s had 5 consecutive days of radiation, a very easy treatment with virtually no side effects, tests have shown the cancer hasn’t spread any further, and at her last oncologist’s visit, he seemed quite pleased with the result. He wants to see her in another 2 months, will repeat the body scans then, and if they are still clear, he’ll see her every three months for check ups. He also wants her to start physiotherapy, to try to get some movement back in her shoulder. Basically, by the time we first saw him, her entire arm was hanging limp, and she needed assistance with many aspects of daily life. Even on her own in the past month, she’s gotten some movement back in it, she can move the arm some, but still can’t move the actual shoulder joint. Overall, the outcome has been very positive, much better than I initially feared.

Now, we’re back to facing the memory problem. With the reduction in pain, we hoped that this would improve, but it’s gotten worse, there’s been a fairly rapid decline. So far, she attempts to cover up her mistakes, and we either make light of it, or pretend we don’t notice, we’ve never directly addressed this with her. Lately, it’s gotten to the point where it’s no longer just memory slip ups, she’s starting to display delusional thinking as well. A few times recently she has told us very implausible stories which, when checked out, are false. She cannot keep track of her finances, she forgets how much money she has in cash on her, how much she has in her chequing account, etc. We can tell her something 5 times in the space of an hour, but these details don’t stick with her, she seems to have lost the ability to move financial information from working memory into long term memory; the same with dates and appointments. She also has a difficult time remembering to take the new pill that the oncologist put her on; we have to remind her daily. There have also been some slip-ups with her long time medications. I can see her struggle to remember things sometimes, and it’s heartbreaking. There are some things that she is still fine with remembering, and some days are better than others, but the bottom line is, without my sister and I to oversee her personal care, her finances and her health care, she would be incapable of taking care of herself, and as time goes on, her ability to live on her own requires more and more effort and vigilance from us.

I’ve discussed the situation with both her oncologist and her family doctor. The oncologist feels that this is not cancer related, that if it was, she’d have other symptoms like headache or sensory issues. He said that while they have a geriatric assessment team at the clinic, they prefer this sort of thing to be taken care of by the family doctor if possible. Her family doctor told me that she will need to be seen by the one specialist that treats dementia in our city. That specialist requires a great deal of preliminary testing to be done – blood work, bone mineral density scans, an ECG - before she will even book an appointment. I would imagine that the reason for this is that the tests point to other potential causes of memory loss, and if something abnormal comes up with them, she’ll refer it back to the family doctor. We’re in the process of getting those tests done now, and once they’re done, it will probably be a few months before she can see her.

In recent days, my sister and I have decided we need to start looking into some sort of retirement home/assisted living facility for her. She’s always been adamant that should the need arise for assisted living for her, that she does not want to live with any of us. I pointed out to my sister than although she’s probably okay for the moment, if the decline continues to be as rapid as it has been, that we may end up in a position where we need to find a place for her quickly. Many of the quality, private care places here have waiting lists months long, and if there is a sudden large decline, she may not have a choice, she may have to move in with one of us temporarily until a place becomes available. So, we are going to attempt to have a conversation with her on one of her good days, and try to get her approval to do this. In the meantime, we will start researching and try to find a place for her that will meet her needs and as much as possible, be a place where she’ll be comfortable, and hopefully have social stimulation as well as whatever level of personal and health care she requires as her needs change.

Add into the mix my brother, who has always been somewhat of a black sheep. He’s essentially disengaged himself from the family over the past couple of years, and has had little contact with any of us. Even when he was told about my mother’s cancer diagnosis, he still only called her every week or two for a few minutes, even though he lives in the same city. Now he’s learned of what’s going on with the memory issues, and wants to have a family meeting with my sister and I so we can discuss what to do. Very typical, we do the heavy lifting for years, and then when there’s something in it for him (like my mom’s stuff when she eventually moves), he rushes in like the hero who will save the day, and can pat himself on the back for being a diligent son. Obviously, my sister and I are feeling a ton of resentment toward him.

Everything has been so busy, so intense for the past several months that I feel like I’m just starting to process, now. My stress level is off the charts, and sometimes I feel like I’m barely hanging on by a thread. My sister has been a great source of support, we lean on each other a great deal, and we coordinate our schedules so that we can give mom the care and attention she needs. There is the normal self-doubt. On her good days, I wonder if we’re being premature in seeking care for her. On bad days, I wonder if we’ve left it too long. I feel a great deal of sadness and fear, but in another way, I’m also sort of resigned to the situation. I have no idea how we’re going to broach this subject with my mom. A great deal of the time, if feels like we’re flailing here, even though rationally I know we’re doing everything we can.

I’m sorry for the length of this. I actually wrote the bulk of it last night when I couldn’t sleep, and attempted to edit it today, but I left in what I felt were pertinent details. Maybe someone else will read it and recognize that they’re not alone in their struggles to care for an ailing parent. One piece of good news – I went over there this morning to help my mom shower, and when I got there, she had already showered herself. This is the first time in 3 or 4 months she’s been able to do this, so that made me very happy. At this point, I’ll take small victories. And for everyone that is going through similar situations, I sincerely feel for you. It’s not easy.
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Old 04-02-2009, 06:21 PM   #13
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Thanks Vintage Punk for sharing. I will be praying for you and your mom.

It seems that a devastating illness can strike a family at anytime. You don't have to be middle aged.

My father in-law was sick for years before he finally passed on from a pulmonary hemorage. His death thankfully was painless. He was sitting in his favorite chair, closed his eyes and that was it. But, for years before, he went down hill. He suffered from a brain tumor which left him with dementia. He basically was like a five year old. He was hospitalized so many times and my son doesn't even remember when grand dad was well. We would have to bath and shave him. Make sure he took his meds and since he couldn't drive, either. We took him to the doctors.

If it seems to anyone that Vintage Punk, Yolland or I, are complaining. We are not. We love our families and would do anything for them. It is just that sometimes you need an outlet. Some one to talk to, who is going through the same thing. It helps us to keep our sanity.

God bless all of the folks who are caring for someone who is sick. I believe there is a special place in heaven, for those who do this.
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Old 04-02-2009, 11:15 PM   #14
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^ Thanks A stor, good point. In the end it's really not all the extra 'work' that makes these situations stressful, gripe-worthy though that often feels; it's that it's so hard on an adult child to watch a parent make that slide, gradually or suddenly, into end-stage vulnerability and suffering--someone you've loved and known deeply for a lifetime, and probably still feel a considerable measure of instinctive awe and deference towards, underneath all the equally inevitable resentments and hard-won self-distinctions. It's not uncommon for these situations to abruptly confront you with the reality that feelings you didn't even think you had anymore are in fact still very much there beneath the surface, and that's not always pleasant. And as with caring for one's own children, you often find there a potential for anguish and worry that you couldn't have initially anticipated.

I knew in starting a thread like this that much of it (including my own posts) would be 'veering into ZC territory' as VP put it, and that's fine. Hopefully we can also articulate a bit some more policy-oriented approaches to the issue, but it's almost impossible to discuss something like this without getting rather heavily into the personal.
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Originally Posted by VintagePunk View Post
Now, we’re back to facing the memory problem. With the reduction in pain, we hoped that this would improve, but it’s gotten worse, there’s been a fairly rapid decline. So far, she attempts to cover up her mistakes, and we either make light of it, or pretend we don’t notice, we’ve never directly addressed this with her. Lately, it’s gotten to the point where it’s no longer just memory slip ups, she’s starting to display delusional thinking as well...the bottom line is, without my sister and I to oversee her personal care, her finances and her health care, she would be incapable of taking care of herself, and as time goes on, her ability to live on her own requires more and more effort and vigilance from us.

...Her family doctor told me that she will need to be seen by the one specialist that treats dementia in our city.
Huh, I'm really surprised that in a city there'd only be one dementia specialist, considering how common a problem this is. Well, at any rate it's obviously worth the effort to have her seen by a specialist, assuming that's where the tests continue to point. Hallucinatory thinking is always frightening…I think to an extent I've been insulated from my mother's frequent expressions of it, in that when you've got the 'benefit' of knowing the cause with reasonable specificity then it doesn’t feel quite so unnervingly out of the blue; plus of course she’s in a situation which protects her well, if not entirely, from potential dangerous consequences. But to see someone who’s still living on their own, and in legal control of all their own affairs, slipping into that…that’s got to be scary.

If you haven’t done so already--and despite it being the last thing anyone ever feels like doing--now would be a good time to ensure the legal groundwork for establishing who’ll be in charge of what upon her incapacitation gets nailed into place, while she’s still capable of contemplating her preferences and committing them to writing under a lawyer’s guidance. It is important, very important, to show full respect for an elderly person’s autonomy so long as they retain even the most compromised extent of it. But at the same time, you don’t want to get into a situation where the person’s much-valued ‘independence’ is in truth a flat-out delusion, and the reality is they’d be at disaster point within a day or two without intensive assistance, yet the legal backup plan for the imminently inevitable remains in limbo.
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In recent days, my sister and I have decided we need to start looking into some sort of retirement home/assisted living facility for her. She’s always been adamant that should the need arise for assisted living for her, that she does not want to live with any of us. I pointed out to my sister than although she’s probably okay for the moment, if the decline continues to be as rapid as it has been, that we may end up in a position where we need to find a place for her quickly. Many of the quality, private care places here have waiting lists months long, and if there is a sudden large decline, she may not have a choice, she may have to move in with one of us temporarily until a place becomes available.
As far as it goes, it’s fortunate she feels this way about assisted living—that’s one less painful obstacle for you to have to contend with. Sometimes a social worker can be a big help with this process. Don’t overlook newer private facilities—despite their thinner track records, they often have an eagerness to please and distinguish themselves which can be beneficial, and besides you generally learn the most about a facility by visiting it rather than by word-of-mouth. Be honest with them about her deficits and inquire into how they handle various forms of deterioration—a patient who turns out to present ‘issues’ that a given facility and its staff aren’t equipped or willing to handle may well get abruptly booted out, so it’s seldom worth it to make someone’s prospects out to be better than they really are, tempting though it can be when you see a facility you really like.
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Add into the mix my brother, who has always been somewhat of a black sheep...Now he’s learned of what’s going on with the memory issues, and wants to have a family meeting with my sister and I so we can discuss what to do. Very typical, we do the heavy lifting for years, and then when there’s something in it for him (like my mom’s stuff when she eventually moves), he rushes in like the hero who will save the day, and can pat himself on the back for being a diligent son.
I have had a bit of tension with one of my brothers, nothing too bad though. Without getting into preaching to a situation I don’t know jack-shit about, which is certainly not my intent, I would just say keep in mind that there can be multiple ways for different siblings to help out in accord with their different personalities, knacks, current living/job situations, and relationship histories with the parent; that the tensions stirred up by collective response to a parent’s decline tend to wound and unsettle everyone more than the garden variety Damn-that-know-it-all-busybody! (or whatever) type problems, so you may want now and then to stop, draw back, and ask yourself if you’re really prepared and/or willing to possibly mutually destroy sibling trust and basic goodwill for a lifetime over a situation that realistically only lasts so long; and that so long as the parent is still capable of making their own decisions in this regard, their wishes about the role and say each child should have in planning their future should be kept front and center.
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The U.S. has good services for senior citizens, if the families can afford it. The problem is that this care can be financially out of reach for most working class families. Especially, with the cost of health insurance. Medicare is basically a joke, since it does not cover all health expenses. Forcing those who are most vulnerable and on fixed income, to spend even more for added, private insurance.

This puts an added burden on the middle age. Who have parents, children and possibly grand children to care for.
Yes. Private nursing home care for instance averages around $75,000 per year, which can gobble up even a quite-well-off senior's assets at an alarming rate--and as you say, Medicare often feels more like a token slight brake on that drain than a genuine 'assist.' And of course there's all manner of 'incidental' expenses for family members to absorb. I'd be lying if I denied occasional moments of resentment that at 37 and with three young kids to worry about, I now have considerable outlays of time and money on my mother's care to worry over too, a situation which could conceivably continue until the kids have long since left the nest and we ought to be focusing on our own retirement. Of course that's all the more heightened in families where the eldercare takes place in the home.
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I'd ring them in a second, but I have a couple of rather (seemingly) insurmountable hurdles in that the family member in question works in the hospital in my area that the mental and aged health teams work out of.

...So we've essentially got a paranoid (perhaps to an extent with reason) woman, who works in a hospital that she would need to spend a lot of time in with facing this, she is denying even a suggestion that we need to get her investigated further...she is prone to aggression and outbursts on random people such as shop assistants, etc, she believes at times that we are all plotting and discussing her without her knowledge, she is bitter and confrontational, she has majorly disrupted sleep, she creates arguments and stories at random times, she does fabricate ridiculous cover ups for things like her sleep patterns, her weight loss, her irritability, etc... I could go on and on. She functions well, it seems, at work, and is able to get herself around the place with no problems. So she is not disorientated and has no trouble remembering her immediate family. She doesn't answer questions or insert random out of place things in the wrong context when talking, either. Still, the downward slide is definitely there. I don't have a clue how to get actual help. I know I won't be able to get any significant help from a GP or referral without her attendance, and due to strict confidentiality laws in regard to the health system won't get very far with me doing the legwork without her.
Eesh. Yes, that sounds pretty awful. This relative doesn't by chance otherwise have a history of any of this type of behavior, does she? Because while these could definitely be early-warning symptoms of age-related cognitive decline, I'm pretty sure--VP would know this better than I would--that there are some forms of episodic paranoic disorder where the episodes often increase in duration and intensity with age; in which case, theoretically, some actual progess might be made through psychotherapy and perhaps medication (though unfortunately, such disorders are usually inherently tough to treat anyway). I really wouldn't have a clue what to suggest in this relative's case other than a standard family/peer intervention--which yes, carries the risk of making her even more paranoid, but I'm not sure what other option for trying to help her there could possibly be, since based on your description it sounds like she's otherwise quite capable of managing her affairs, therefore (e.g.) worming your way into a position of greater influence through informal homecare assistance then going from there probably wouldn't be feasible.

Regardless, I wish your family luck with this situation.
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Old 04-03-2009, 09:43 AM   #15
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Angela, I am also praying for you and your family.

You have brought some excellent points, in regard to the cost of health care. $75,000 per year is more than my family earns. The soaring cost is forcing families to provide care themselves. Some of us have had to quit our jobs and stay home, in order to give full time nursing care. This was the case with my father-in-law. He could not be left alone. His VA benefits did not cover a home nurse. So, everything was left to my mom-in-law and me. We did all of his home care. Something has to be done in the U.S to address this problem. The average family cannot afford out of pocket. Care for severe illnesses.

P.S. Thanks Yolland. It does help to talk to others, who are going through the same thing.
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