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Old 04-03-2009, 04:49 PM   #16
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VP, thanks for sharing.

From my personal experience, while the physical ailments (in your mom's case, the cancer) are not directly related to her memory, they are contributing factors. My grandmother's Alzheimer's seemed to progress at an alarming rate following her heart attack in 2003. She was never the same, and her memory loss was stunning, almost observable on a daily basis. Another thing that we noticed is that hospital visits were generally setbacks, and one AD specialist told us that patients with dementia do best when regimented. When you remove them from their environment and put them in a hospital, even if it is just for a day or two, their level of disorientation grows exponentially. From the new environment, to the scores of strangers around them, it seems to set something off so that their memory is worse and their confusion grows.
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Old 04-03-2009, 04:53 PM   #17
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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.
This is so true.

My maternal grandmother died almost 2 years ago. She was mentally sound, but a broken hip had done her in, although she eventually died of MRSA. My Mom and her sister had some major issues because my Aunt had been a very independent woman who didn't have a close relationship with her parents. She moved out as soon as she could, went to live all around the world, in Uganda, and in Japan before working all over Europe and much of it was to get away from what she felt was a strict upbringing. But when my grandmother got sick, it so happened that she now lived near her, whereas my Mom lived a half a world away and she therefore became the sibling that was in control. And because of her past relationship, she had immense feelings of guilt, which meant that anytime there was even a minor problem, she'd rush my grandmother from the nursing home to the hospital. The last 6 months were nothing but suffering for my grandmother because she should have been left to die peacefully and in comfort rather than have absurd, heroic measures taken to save somebody who could not be saved. But my Aunt couldn't bear the idea of letting her go, even though she was mostly unconscious, unaware and unable to speak, and so it went.

It is hard, because when one sibling lives nearby and is in charge of most of the decisions, and is bearing the brunt of most of the responsibilities, you can't really direct them by remote control from far away.
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Old 04-04-2009, 05:08 PM   #18
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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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^ 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 agree with you both. I strongly realize that not everyone has the same set of circumstances that I do, nor are they dealing with similar personality types, etc, but doing what I do for my mom comes as naturally to me as breathing. We've always been a close-knit family, and I feel very close to all of them with the exception of my brother. Our closeness has been more variable and intermittent over the years, depending on where he's at, personally.

So, yes, my feelings of distress, sadness, fear, and all those other negative ones are based purely on caring, and not wanting my parent to suffer, as well as personal feelings of inevitable loss regarding a relationship that's very, very important to me.

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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.
We live in a city of around 100,000, and the one geriatrician that we do have actually serves not only our city, but works in another one, as well. Unfortunately, some areas in Ontario are grossly underserviced by some medical specialties, resulting in longer than usual wait times. We do have the option of requesting that we be sent to another city, and that's actually one I would consider, but I've looked up this doctor and she seems to be very highly recommended, and she sounds like someone my mom would feel very comfortable with.

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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.
Fortunately, this is something that's been taken care of for a long time now. My sister has financial power of attorney, and I have personal care/medical power of attorney. My mom is so thoughtful, she wanted us each to have responsibility so neither of us would feel left out, lol. However, my sister and I would definitely discuss and seek the approval of the other before doing anything in either of these areas.

I do strongly urge families who haven't discussed this to do so, though. It makes things so much easier.

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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.
Actually, there's been an interesting development in this regard. Until a couple of years ago, my mom lived next door to me, then she decided that the place was too big for her, she didn't want to have to negotiate the stairs, etc. She moved into a cute, 2 bedroom condo a few miles away from me, hoping that she could get to know her neighbours, and it would provide social opportunities. Unfortunately, the majority of people living there are working couples, and the one peer she had in her building moved out last year to go live with her daughter. So, when she's home and we're not there, she's fairly lonely. Yesterday we had some errands to run here, and then she came with me to pick up my daughter for the weekend, which gave us a lot of opportunity to talk. We were discussing her current living situation, and as if the thought just popped into my mind, I said "hey! Have you ever thought of moving into a senior's residence? There'd be a lot of activities, and meals are cooked for you.." To my surprise, she enthusiastically said she'd just been thinking of that the other day. We discussed the pros and cons for a while, and then I told her about the lengthy waiting lists, and said that it wouldn't hurt to start looking around now, for sometime in the future. She was very agreeable to this, and she even called my sister when we got home, and told her. My sister was very impressed with my persuasive skills! I really do think that with the point she's at now, social stimulation will be the best thing in the world for her, and possibly slow the disease progress.

Another upside is that with most of these facilities here, they accommodate various levels of physical and cognitive need. If you're placed in an area for fairly independent people and they find that your need for care increases, they simply move you to the area of their facility where they can provide that care - once you're in, you're in. That would give us so much peace of mind.

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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.
I agree that in general, it really is best to keep family relationships smooth, if at all possible. Without getting into specifics, in this particular situation, there are factors involved that make it extremely difficult to forgive him, nevermind welcoming him into the Mother Care Planning Committee. While I would never do anything to intentionally destroy the relationship permanently, at this point in time, his feelings or input are of little concern to me. Maybe I'll feel differently once all this evens out and emotions are running a little less high, but for now, I have greater concerns. That said, if my mom ever communicated to my sister or I that she wants him involved, we'd both respect her wishes, but the fact is, that while she loves him and forgives more easily than we do, she doesn't trust his judgment.

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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.
I feel so awful when I hear about people who are also struggling financially to care for an elderly parent. Private facilities do cost substantial money here (nowhere near 75k annually, though), but there are also decent quality public funded ones available, and of course, medical care is covered here in Canada.

My heart goes out to people who have financial factors to worry about, in addition to the other worrisome things inherent in a situation like this. I honestly don't know how you do it.

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VP, thanks for sharing.

From my personal experience, while the physical ailments (in your mom's case, the cancer) are not directly related to her memory, they are contributing factors. My grandmother's Alzheimer's seemed to progress at an alarming rate following her heart attack in 2003. She was never the same, and her memory loss was stunning, almost observable on a daily basis. Another thing that we noticed is that hospital visits were generally setbacks, and one AD specialist told us that patients with dementia do best when regimented. When you remove them from their environment and put them in a hospital, even if it is just for a day or two, their level of disorientation grows exponentially. From the new environment, to the scores of strangers around them, it seems to set something off so that their memory is worse and their confusion grows.
It's funny that you mention that, I've wondered all along if the cancer has hastened the onset and progression of the dementia. It seems logical, though. Speaking to the oncologist, I sort of expected him to confirm that this could be the case, but he didn't comment on that.

I also wanted to comment that I have a great deal of respect for your parents and your entire family for taking on the situation with your grandmother, and providing her with many years of care. Wow. Not many people could accomplish what your family did, and although she was unable to communicate it, I'm sure it meant the world to her.
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Old 04-04-2009, 06:08 PM   #19
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All I can say is that I'm terrified of the whole prospect, and I think about all of it much more than I used to. Honestly sometimes it's all I can think about. My uncle has Alzheimer's. Best wishes to all of you who are dealing with this, I applaud you for what you're doing.
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Old 04-05-2009, 04:39 AM   #20
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Fortunately, this is something that's been taken care of for a long time now. My sister has financial power of attorney, and I have personal care/medical power of attorney. My mom is so thoughtful, she wanted us each to have responsibility so neither of us would feel left out, lol.
....
That said, if my mom ever communicated to my sister or I that she wants him involved, we'd both respect her wishes, but the fact is, that while she loves him and forgives more easily than we do, she doesn't trust his judgment.
Sounds like your mother chose wisely in her planning for the future, then. Unfortunately my mother hadn't made any such decisions--she'd probably anticipated being fully independent for many years yet, and none of us had really tried pressuring her about it--so there were major legal headaches involved in formally establishing a chain of authority, even after my siblings and I all agreed I would be her guardian. You hear lots of horror stories about situations where ugly fights ensued between siblings in the absence of a power of attorney arrangement, or where a parent chose poorly in the delegation--picking their 'favorite' child without thinking through whether that child was really well-suited for the responsibility, or letting themselves get bullied by the child most recently involved in their care into giving him or her sole authority against their better judgment, and so on. In many ways it's a good thing that our society allows flexibility in this matter--I'm thinking, for instance, of India, where it's still generally taken for granted that your oldest son (and his wife) will fully provide for you in their/your home in your old age, which directly or indirectly can create all kinds of problems--but it has to be said our way has its vulnerabilities too.

-----------------------------------------------------------------------

One thing that is a kind of saving grace, for many anyhow, about the US eldercare system is that once you've exhausted all your own assets on institutional care--though not a minute before, haha--then you'll become eligible for Medicaid, which enables you to remain in an institutional care setting. Close to half of the total US nursing home care tab is currently picked up by Medicaid. There are nursing homes which exclusively serve Medicaid patients (though unfortunately these tend to be of poor quality), nursing homes which never serve Medicaid patients under any circumstances, and nursing homes which initially require you to pay through your own resources but allow you to stay once you need to go on Medicaid. The nursing home my mother lives in is of the latter type, so fortunately she'll be able to stay there once her own monies and longterm insurance run out. That will mean some hassles--there's no guarantee every service the patient was previously receiving will be covered, and the process of establishing eligibility is notoriously difficult--but the main thing is that she'll be able to stay there and receive the essentials. (Of course, for surviving spouses of nursing home patients, this is all rather less comforting, because the system basically dictates how much you're allowed to keep for yourself, so you then have to worry about whether you'll be able to afford the same good-quality care your spouse received if and when your own time comes.)

Medicare, Medicaid (and many insurance plans) also cover home care services, but the coverage there is a LOT spottier--even assuming a wide array of such services are abundantly supplied in your area, which they often aren't. Many states are making a concerted effort to expand publically funded home care services since in most cases it's considerably more cost-efficient, but that's still very much a work-in-progress. It can be bewildering trying to discern the logic behind what is and isn't covered; for instance, certain minor medical procedures which are really quite easy for any relative to learn to do may be covered in full, but then bathing, medications, and home modifications needed for safety's sake won't be covered at all. (Private insurance plans are often similarly spotty.) In an effort to make the most of a limited number of qualified providers, many municipalities are concentrating their services at adult 'day care centers,' which is a good idea, but doesn't help caregivers for the considerable number of elderly people whom it's not feasible to transport that often.

There are some longterm care facilities in the US which provide the sort of graduated-care system VP described, where as your incapacities increase you can just move to another wing of the same familiar facility. There's been no concerted attempt to make this a pervasive standard though, so it's not unusual for families of elderly people living in care facilities to have to go through placing them somewhere all over again as they deteriorate.

On a somewhat related note, I often wonder why more nursing homes don't have a system where patients could be grouped together by impairment type, and/or why there aren't more facilities specializing in particularly common impairments. At the rather small nursing home where my mother lives, though all the patients do have in common that they require skilled care, still it really stands out to me that there are at least three distinctly different groups: patients who are physically infirm but still mentally sharp, patients who are very 'out of it' mentally, and patients who are maybe partially mentally competent--for example, they recognize the employees and their fellow residents and enjoy talking with them, but constantly (and I mean constantly) repeat themselves, or only inconsistently make sense, etc. The facility doesn't seem to sort them by room along those lines though, which I'd think has got to be really hard socially on the 'able-minded' patients--in fact, most of the ones I've gotten to know in that category, I got to know because I struck up a conversation with them one day after noticing how forlorn and lonely they looked. Of course, less able-minded patients need social stimulation too, but in their case that requires staff facilitation no matter what, whereas the sharp-minded ones, it just seems so unfair to me not to make it easier for them to meet and regularly interact with other patients whom they might actually have satisfying conversations with. And when your mobility is very limited, that's pretty hard to do if you're not living in a wing where you're surrounded all day by such potential friends. As for the less mentally competent patients, if nothing else, it seems like staff would probably be better at addressing their specific social needs if staff were continuously assigned to the same area, with patients who have broadly similar social/mental deficits.
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Old 04-05-2009, 04:17 PM   #21
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I suppose this was a timely thread.

My grandmother died about an hour ago, from the flu, of all things. It has been a long road, and I hope that she has found peace and memory in death.
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Old 04-05-2009, 07:24 PM   #22
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Sorry to hear that, anitram. I'm sure there must still be a real sense of loss especially for your father, even if the person she used to be disappeared long ago.
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Old 04-05-2009, 07:42 PM   #23
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I'm so sorry, Anitram. My condolences to you and your family. Even though the mental preparation for something like this began long ago, I'm sure it's still difficult for all of you.
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Old 04-05-2009, 07:56 PM   #24
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I'm so sorry, anitram. It always hurts, even when you think of it as a release.
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Old 04-05-2009, 11:38 PM   #25
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For everyone here.
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Old 04-05-2009, 11:50 PM   #26
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Anitram, I am so very sorry for your loss.

All of us here......"we get to carry each other." What better purpose in life, than to love and care for those whom we honored to call our family and friends.
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Old 04-05-2009, 11:55 PM   #27
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Thanks, guys!

I just got home tonight. My Mom said it was kind of odd, they'd bought my grandmother a beautiful new nightgown this week and when they went to see her today, she was wearing it, and she had just had a bath and her hair was done. My parents spent some time with her, but she wasn't talking or anything and then when they left, she died about 20 minutes later, just fell asleep. What a relief that was for us, compared to the sheer pain and suffering that my other grandmother experienced 2 years ago.

We are throwing her a big party on Wednesday after the funeral (this is a cultural/ethnic thing where she comes from), and she said during her lifetime that she wouldn't care if she was buried in a cheap pine box but if she sees us from above and we've cheaped out on the food, there will be hell to pay.
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Old 04-06-2009, 10:48 AM   #28
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I think that is a wonderful tribute to your grandmother. A lot of cultures do this. They celebrate their loved ones lives. And talk of all the happy memories. How this beautiful person meant so much to them I believe the Irish call it a Wake.

P.S. Don't cheap out on the food. Grand mom will know!
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Old 04-09-2009, 12:18 AM   #29
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Thanks, A Stor!

It was a really lovely service (as far as these things go) and there were tons of people who came to celebrate her life and that was very good to see. And everyone ate and drank, she'd have been proud of the way she was remembered.

My thoughts are with all of you who have family members that are going through the ageing process. It is a hard thing, and it can be very stressful for the family. Remember to take care of each other and yourselves.
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Old 04-09-2009, 06:11 AM   #30
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Thanks, A Stor!

It was a really lovely service (as far as these things go) and there were tons of people who came to celebrate her life and that was very good to see. And everyone ate and drank, she'd have been proud of the way she was remembered.

My thoughts are with all of you who have family members that are going through the ageing process. It is a hard thing, and it can be very stressful for the family. Remember to take care of each other and yourselves.
Deepest condolences, mate. I'm glad you guys got a good farewell for her.

It's becoming more common for wakes here as well, which tend to lead into a fairly good time as the difficult part of the funeral is over, you're in a more casual setting, and it's very cathartic to laugh and share stories with everyone else who is feeling exactly as you do. The loss we feel is a measure of what they were to us when alive, that's for sure.
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