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Old 08-29-2018, 12:52 AM
kaylasdad99 kaylasdad99 is offline
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65 years old, blind, suffering from dementia, and now crippled...

Not sure if this is a Pit rant, or an MPSIMS post.

Not sure if I'm going to post it after I finish writing it. I've been composing it inside my head for weeks. Maybe I'll write it out, then decide to C&P it to a document on my hard drive and just archive it there.

Kaylasmom, my bride of nearly 35 years, has been in problematic health for the past few. She's blind from birth (being one of an epidemic of baby boomers who, born prematurely, were put in incubators with oxygen levels that caused retinopathy -- at the time it was called retrolental fibroplasia, but the term has apparently fallen out of favor, and she is now described as having suffered ROP, Retinopathy of Prematurity -- but I digress). She was diagnosed with type II diabetes in 1994. During the period encompassing 1984-2005, it would not have been controversial to characterize her as morbidly obese. Those years did take their toll. She also had high cholesterol, and hypertension.

In 2011, she fell and broke her hip, which was replaced, and the incident led to tests which resulted in a diagnosis of osteopenia, a precursor to osteoporosis (AIUI). The following year, she needed her gallbladder removed, concurrent with recovering from pancreatitis. She's not a big fan of hospital stays, needless to say.

So it's good that she was able to stay OUT of hospitals from 2012 until 2017. During the summer of last year, she had what I thought at the time was a bout of pneumonia, so I took her into the ER. Turned out to be Congestive Heart Failure. [Another digression: for a few years, she worked as a darkroom technician in both military and civilian medical facilities, developing all manner of X-rays. During her time in these jobs, she was on hand to witness several cases of patients dying on the table after being injected with contrast for procedures such as angiograms.] These experiences left her with a dread of undergoing any radiological procedures involving catheterization. And of course, the cardiologist wanted to perform an angiogram and possibly angioplasty.

She was extremely anxious about consenting to it, but eventually allowed herself to be talked into it. While the diagnostic went off without complications, it was discovered that her arteries were too narrow to make her a candidate for angioplasty, and with too few "clean" areas to make it feasible to perform bypass surgery. The recommended treatment going forward is a couple of blood thinners, and Lasix (to prevent fluid build-up in her lungs). So she's been on this regimen for about a year.

This past January, she began displaying signs of loss of cognitive function (short-term memory lapses, false beliefs, and aggressive and hostile interactions). She had been very defensive about any of this being brought to her attention, accusing me of calling her "retarded," or of planning to put her into an old folks home, or of having affairs with several women, be they workplace associates, her blind girlfriends from childhood, or her sister who lives three hundred miles away. I finally got up enough nerve to brave her wrath by asking her primary care provider to give us a referral to a neurology clinic for evaluation.

Before I was able to get the appointment, she had another bout of what I thought was her CHF acting up, so I had her in the ER again in late May. This time it turned out to BE pneumonia, but also her electrolytes (Na and K) were out of whack, so she was there for three days, getting back under control. the first part of June saw her hospitalized three more times for similar problems, with the presenting symptoms being either low blood sugar or an allergic reaction to one of the blood pressure meds she had been on for the past four years. Eventually, they took her off two of her BP meds (out of four, and her BP is just beautiful these days, tyvm), and doubled her Lasix dosage. They also changed her cardiologist, and she's pretty happy with him, when she can remember who he is.

Because the dementia symptoms had not yet been addressed. I got her to a neurologist in mid-July, and he ordered a brain MRI, after confirming the aforementioned cognitive symptoms during a consult. He also had her give a couple of test tubes of blood for lab work.

Meanwhile, after a hospitalization in 2017, she complained of pain and numbness in her left leg and foot, which led to a spinal MRI that found a bulging disk. Physical therapy exercises were not particularly effective, so this past February, she was given an epidural injection of Kenalog, which was like a MIRACLE drug for that pain. But it was wearing off by late July (which, I'm given to understand, means that it worked for a good long time), so we set up an appointment to arrange another epidural. As with the first one, the pain specialist wanted her to get her cardiologist to approve taking her off one of her blood thinners for a week. This was her new cardiologist, remember, the one she picked up during her June hospitalizations. He decided that she should have a cardiac stress test before he'd approve it. Which brings us to August 7.

On the morning of August 7, I took kaylasmom out to the car, to drive to the hospital for the stress test. She was feeling a bit unsteady on her feet, so I had her in her wheelchair. When she transferred from the wheelchair to the car, she twisted her right ankle (so, good thing I had the wheelchair handy, right?). When we were having the stress test done, I noticed that the twisted ankle was alarmingly swollen. I got her home, applied Mineral Ice (think Ben-Gay, and you'll get the drift), and wrapped the ankle in an Ace bandage. Later that afternoon, I got her to a different facility for her MRI.

By Thursday evening, when I was about to go to work, it had become clear that Mineral Ice and a compression bandage were not bringing this ankle back to normal, so on Friday (August 10), I brought her to an urgent care facility that had an X-ray machine. The doctor at the urgent care confirmed that the ankle was in fact broken, and told us to get a cast on it. He also sold us an $80 orthopedic boot, which kaylasmom found too uncomfortable to wear, and also, where's the other boot (dementia again)?

On Monday the 13th, I got a referral from kaylasmom's PCP to an orthopedist, who was able to see her that afternoon and put a cast on the ankle. He also noted that her ankle had TWO breaks, based on his reading of the X-ray we had given him. He was concerned that since she had walked on it for three days following the X-ray, that the broken bones might have shifted, so he asked us to get a second X-ray and bring it to him in a week. He also ordered kaylasmom to not put ANY weight on the ankle. The second X-ray (taken on August 18), showed some bone movement as well as that there were actually THREE breaks. The orthopedist said that he wanted to see another X-ray after one more week to be sure, and that if there was any more bone migration, he would have no choice but to recommend surgery on the ankle, and that we should start getting clearance for surgery from her PCP and cardiologist. This whole thing was VERY upsetting to kaylasmom. She declared that she absolutely DID NOT WANT to have surgery, and promised that she would stay off the ankle for the next week (she had not been compliant up until that point, and -- spoiler alert -- she STILL has not been compliant during the past week, mostly while I've been at work. When I catch her trying to hobble around to the kitchen and the dinner table, I put a stop to it ASAP, whereupon she says I'm being mean to her, and not very nice).

Back to the brain stuff. Last week, we got back into the neurologist. Kaylasmom's MRI showed no evidence of stroke or other injury (YAY!), but there was moderate global cerebral atrophy noted. Neuro guy said that her blood work showed low levels of B1, B12, and thyroid, and he wanted her on supplements and would check her again in December. If no improvement is apparent, he CAN test her cerebral-spinal fluid to diagnose Alzheimer's, or he can just put her on the meds he would prescribe if Alzheimer's had been diagnosed. Not great news, but neither is it utterly hopeless, yet.

So yesterday (the 27th), I took kaylasmom to an imaging center for her third ankle X-ray, which we immediately brought to the orthopedist. If you read the spoiler alert earlier about her compliance with the no-walking order, it should come as no surprise that he found significant further movement of the broken bones, and was urging her in no uncertain terms to accept the repair surgery. Before we were out of the office, kaylasmom seemed to have agreed to it (although you could tell she was heartbroken about it), and the doctor gave us a list of things we'd need to get her cleared for surgery this Friday.

Ten minutes after we left the office, kaylasmom was in tears again, accusing me of planning this whole thing and springing it on her with no warning at all. I brought her home and put her to bed, and went back to her PCP's office to obtain orders for blood work, an EKG and a chest X-ray. By later in the evening, she had calmed down considerably, and seemed to accept that the choice she was being asked to make was NOT between surgery and no-surgery, but rather between having a healed ankle and having a crippled ankle for the rest of her life.

We had a (previously scheduled) appointment with her cardiologist this morning. I explained the situation to him, and he (having seen her stress test three weeks ago) unreservedly cleared her for anesthesia. I asked if he could do the EKG right then and there, and he agreed. For her part, kaylasmom cooperated with the EKG while it was happening, although she was impatient with the medical assistant and PA trainee, who would quietly talk each other through the steps ("Please don't whisper!"). And when we were driving home, she was again accusing me of planning this without her consent, of not being very nice to her, of bullying her and forcing her to have the surgery, and of deliberately breaking her ankle so I can have her put into the hospital.

When we got home, I put her wheelchair at the dining room table, and went into the bedroom to change the sheets (because it hasn't been done in a couple of months). She tried to get out of the chair AGAIN. I put her on the bedside commode per her request, and went on changing the sheets. She sat down on the bed while I was doing that, so I put her back in the wheelchair and wheeled her back to the dining room table, with her grabbing onto the door jamb, and the piano to try to stop me. Then when I had the bed made, she didn't want to help me assist her into bed. I had to pick her up in my arms and lay her down on the bed. Half an hour later, the back of her right hand was swollen to the size of a fig (a large fig. Or a small pear). I'm concerned she might have broken it while trying to stop me from wheeling her out of the room. And if THAT's the case, I need to worry about whether she's got some form of wasting disease that makes your bones brittle, and your skin prone to bruising (I had her wedding ring re-sized in June, and now rings are practically spinning around on the fingers of both her hands).

I'm honestly at my wit's end here. I discussed it with my sister (PhD. in medical ethics) by text in the spring, and she advised me to look into getting a medical power of attorney for kaylasmom's treatment, but I kept putting it off, and now it looks kind of late to do that in time to authorize the surgery (hey, if she's going to accuse me of forcing her to get the surgery that is clearly in her best interest, I might as well be guilty of it, right?). I find myself wondering if this counts as being a danger to herself so she could be subjected to a 5150, and would THAT allow me to authorize the surgery against her stated wishes? (Almost certainly not, and I'm ashamed of myself for entertaining the idea.) I'm also contemplating advising orthopedists to put a caltrop inside the bottom of any cast they apply, just to enforce compliance.

I just don't know what to do. I promised more than a quarter-century ago that I would be with her for the rest of my life, and that's still what I intend to do. I just don't know how long I'll be able to keep it up before the task kills me.
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Old 08-29-2018, 01:05 AM
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hajario hajario is online now
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You have my sympathies and respect. I’m sorry that you’re going through it.
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Old 08-29-2018, 01:06 AM
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There is nothing I can say except you are a good man and you have my sympathy. I wish you and your wife the best going forward.

Now if you'll excuse me, I have to go cry.
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Old 08-29-2018, 01:14 AM
kambuckta kambuckta is offline
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Oh what an awful, awful situation. My heart goes out to you kaylasdad.

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Old 08-29-2018, 01:14 AM
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I wish I was close by and could do more than send internet hugs.


ETA: calcium issues can lead to bruising problems (it's a key component in the proteins involved in coagulation); bring it up with the docs anyway even though in theory bruises should be something they see, because one problem with this "twenty doctors in thirty places" system is making sure that at least some of them get the whole picture.

Last edited by Nava; 08-29-2018 at 01:18 AM.
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Old 08-29-2018, 01:18 AM
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Beckdawrek Beckdawrek is offline
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You will break down if you're not careful. Get some help if you can. Maybe through a home health organization. Check and see what your insurance will cover. She is a real danger to herself. I found with my in-laws that dementia patients can go through phases of anger and disbelieving of their caregivers. It is disconcerting to watch or be on the receiving end of. Plus I am sure you are fearful for your spouse and your future. You need to talk to someone. I do hope the surgery goes well. Good luck. And vent here when you need to. I, for one will listen
ETA get that medical POA.

Last edited by Beckdawrek; 08-29-2018 at 01:21 AM.
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Old 08-29-2018, 01:19 AM
Sloe Moe Sloe Moe is offline
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You're a good man, Dad. Just my advice: don't pit your wife.
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Old 08-29-2018, 01:25 AM
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You're a good man, and have my respect. I pray the days ahead with your wife are as fulfilling and peaceful as they can possibly be.
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Old 08-29-2018, 01:28 AM
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Wow. That’s rough. It’s a terrible thing when the brain starts to function like that. I think, I don’t know, that if her mind was 100% and she knew how she’d be that she’d want you to act in her best interest.

Caltrop may backfire though.
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Old 08-29-2018, 01:33 AM
kambuckta kambuckta is offline
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You're a good man, Dad. Just my advice: don't pit your wife.
WTF?
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Old 08-29-2018, 01:35 AM
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You're a good man, Dad. Just my advice: don't pit your wife.
Rude. I don't think he's pitting his sick wife. He's pitting the terrible circumstances he finds his self in.
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Old 08-29-2018, 01:39 AM
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WTF?
No kidding. He isn't pitting his wife. He is pitting the circumstance he finds himself in.
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Old 08-29-2018, 02:32 AM
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Sorry for your problems.

If you have great insurance or are well-off you might look into adult day care for her for when you are at work:
Quote:
Normally, adult day care is used to relieve the caregiver or his or her duties for the day while ensuring that the care recipient will still receive the proper care in a safe, friendly environment. These centers usually operate during normal business hours five days a week, and some centers also offer additional services during evenings and weekends. Currently, there are more than 4,000 of these programs operating in the United States.

In general, there are three main types of adult day care centers: those that focus primarily on social interaction, those that provide medical care, and those dedicated to Alzheimer’s care. Many of these facilities are affiliated with other organizations, including home care agencies, skilled nursing facilities, medical centers, or other senior service providers.
http://www.caregiverslibrary.org/car...e-article.aspx
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Old 08-29-2018, 02:57 AM
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I just don't know what to do. I promised more than a quarter-century ago that I would be with her for the rest of my life, and that's still what I intend to do. I just don't know how long I'll be able to keep it up before the task kills me.
Perhaps as a first step, you can print all this out and give it to your PCP. (I assume he's your wife's PCP, too.)

He's been in this situation before, with patients and their caregivers, and will be able to help figure out a plan for what happens next. Since he only sees your wife intermittantly, he may not have realized the full scope of what you're dealing with.

He can also give you a once over, to be sure that you're getting the healthcare you need as well.

Take care of yourself. Your wife would say the same, if she were more herself.
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Old 08-29-2018, 02:59 AM
Sloe Moe Sloe Moe is offline
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Rude. I don't think he's pitting his sick wife. He's pitting the terrible circumstances he finds his self in.
I think the humor can be found there, and why he would chose the pit in lieu of other sub-fora.

Last edited by Sloe Moe; 08-29-2018 at 03:01 AM.
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Old 08-29-2018, 03:00 AM
kambuckta kambuckta is offline
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Perhaps as a first step, you can print all this out and give it to your PCP. (I assume he's your wife's PCP, too.)

He's been in this situation before, with patients and their caregivers, and will be able to help figure out a plan for what happens next. Since he only sees your wife intermittantly, he may not have realized the full scope of what you're dealing with.

He can also give you a once over, to be sure that you're getting the healthcare you need as well.

Take care of yourself. Your wife would say the same, if she were more herself.
I think this is a great idea. You're in our thoughts here kaylasdad.
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Old 08-29-2018, 03:04 AM
kambuckta kambuckta is offline
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I think the humor can be found there.
Y'know, I was almost prepared to give you the benefit of the doubt when you posted upthread. Hoping that you might have come back to apologise to the OP for your misinterpretation of his obviously tragic story.

But really? You found humour in kaylasdad's post?

Just wow.
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Old 08-29-2018, 03:10 AM
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I don't think I misinterpreted anything in his post. And the humor is not in his story, but in the fact that it's here in the pit.

But why should I waste time with you? If the OP thinks I was being rude, which I was not, I will apologize and ask him to think no more about my post.
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Old 08-29-2018, 03:15 AM
kambuckta kambuckta is offline
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I don't think I misinterpreted anything in his post. And the humor is not in his story, but in the fact that it's here in the pit.

But why should I waste time with you? If the OP thinks I was being rude, which I was not, I will apologize and ask him to think no more about my post.
Why wouldn't he post in the pit? He's pitting the shitty circumstances that have now prevailed upon he and his wife of 35yrs. The Pit is not just a repository of political woes you know, it's also where people come to just vent about the general pissitudes of life in general. Just like the OP did.

Perhaps you should just crawl back under your rock (after apologising) and come back with a better attitude.

Or you could just fuck off of course.
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Old 08-29-2018, 03:26 AM
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Echoing calls to look after yourself kaylasdad. There's not much that's more draining than trying to do the best by someone who's convinced you've become the enemy
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Old 08-29-2018, 03:45 AM
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I think the humor can be found there, and why he would chose the pit in lieu of other sub-fora.
You're a jerk. Shut the hell up.
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Old 08-29-2018, 03:47 AM
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Why wouldn't he post in the pit? He's pitting the shitty circumstances that have now prevailed upon he and his wife of 35yrs. The Pit is not just a repository of political woes you know, it's also where people come to just vent about the general pissitudes of life in general. Just like the OP did.

Perhaps you should just crawl back under your rock (after apologising) and come back with a better attitude.

Or you could just fuck off of course.
Sloe Moe lives up to his username. By that, I mean he sounds like he's posting from inside of a gin bottle.
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Old 08-29-2018, 03:55 AM
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I don't think I misinterpreted anything in his post. And the humor is not in his story, but in the fact that it's here in the pit. :rolleyes
That's just how the forum culture is. Sometimes threads about trying health circumstances of a loved one are started in the pit. That kind of stuff gets brought up in monthly pit threads, so it's not much different from adding to one of those except a new thread can be expected to reach more readers.
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Old 08-29-2018, 04:01 AM
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Make sure you have time to yourself. When my father had dementia, he visited a care centre twice a week for the whole day.

You really do need that Power of Attorney.

Something else: think about the appearance of elder abuse. You're not going to do it, of course, but over here all it takes is for some over-zealous doctor or social worker to draw the wrong conclusion and you'd be in a world of trouble.
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Old 08-29-2018, 04:02 AM
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I'm so sorry about all of this. I'm amazed that you've gotten this far without collapsing.

My best advice is to talk to a social worker. I don't know what health coverage you have; I do know that Kaiser has social workers on staff, and that they can help with difficult situations like yours. A social worker can give you info about in-home nursing care and respite programs, so that your work load can be more manageable. If your health plan doesn't provide for this, you can contact Orange County Social Services.

Does kaylasmom have an advanced directive? If so, there may be something in it about your making medical decisions for her should she be unable to make them for herself. If so, the fact that she has dementia may effectively give you power of attorney.

If you don't have a community property marriage, you should also look into getting financial power of attorney.

Again, I'm really sorry. You're in a tough situation. Physical ailments are bad enough, but dementia affects your wife's relationship with you and also her ability to participate in her own care.
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Old 08-29-2018, 04:24 AM
kaylasdad99 kaylasdad99 is offline
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Originally Posted by Beckdawrek View Post
Rude. I don't think he's pitting his sick wife. He's pitting the terrible circumstances he finds his self in.
This.
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Originally Posted by Sloe Moe View Post
You're a good man, Dad. Just my advice: don't pit your wife.
Not this. I’m going give you the benefit of the doubt, though; try not to screw it up.

Everybody else, thanks for the kind expressions of support.
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Old 08-29-2018, 04:25 AM
Sloe Moe Sloe Moe is offline
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Thanks for the pardon. Again, you're OK.
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Old 08-29-2018, 04:31 AM
kaylasdad99 kaylasdad99 is offline
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Missed the edit window.

ETA: what do you know, he screwed it up.

I shouldn’t have left this message up so long before hitting “Submit.”
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Old 08-29-2018, 04:36 AM
kambuckta kambuckta is offline
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Missed the edit window.

ETA: what do you know, he screwed it up.

I shouldn’t have left this message up so long before hitting “Submit.”
I'm sorry, I laughed.

Take as much time as you need dude. We've got your back here.

kam
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Old 08-29-2018, 04:56 AM
kaylasdad99 kaylasdad99 is offline
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That's just how the forum culture is. Sometimes threads about trying health circumstances of a loved one are started in the pit. That kind of stuff gets brought up in monthly pit threads, so it's not much different from adding to one of those except a new thread can be expected to reach more readers.
That, and it seemed a little long for the mini-rants thread.

A note about our circumstances. I’ve got a pretty well-paying job at the Post Office, but not the kind of scratch to pay for a long-term care facility. I mention in the thread title that she’s sixty-five, so one might expect her to be on Medicare. Unfortunately, she doesn’t have the forty quarters of work history necessary to qualify for free premiums for Part A. I might be able to handle her Part B premiums, but the Part A would run me over $400 per month. So she’s going to stay on my pretty good PPO plan for another three years, when I turn 65, and they let me get free Part A for both of us.

ETA: Also, I work nights, so an adult daycare isn’t as available an option as it might be otherwise.

Last edited by kaylasdad99; 08-29-2018 at 05:00 AM.
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Old 08-29-2018, 05:01 AM
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Sloe Moe, we’re cool.
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Old 08-29-2018, 05:08 AM
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A note about our circumstances. I’ve got a pretty well-paying job at the Post Office, but not the kind of scratch to pay for a long-term care facility. I mention in the thread title that she’s sixty-five, so one might expect her to be on Medicare. Unfortunately, she doesn’t have the forty quarters of work history necessary to qualify for free premiums for Part A. I might be able to handle her Part B premiums, but the Part A would run me over $400 per month. So she’s going to stay on my pretty good PPO plan for another three years, when I turn 65, and they let me get free Part A for both of us.

ETA: Also, I work nights, so an adult daycare isn’t as available an option as it might be otherwise.
Every time someone posts about the US health-care labyrinth my head has a mini-explosion. But however you can manage it, good luck!

And as mentioned above, take care of yourself too, if not for yourself then for kaylasmum. Without you being well and on the ball, she won't have an advocate for her best care practices.

I think you already know that the dementia diagnosis is a foregone conclusion. Be prepared for the grieving that happens, but have some shit in place to deal with the practical changes that are going to have to take place.

And we're here to listen every step of the way mate.
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Old 08-29-2018, 05:34 AM
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Condolences and best wishes in this rough time, OP.
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Old 08-29-2018, 05:55 AM
Velocity Velocity is online now
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Sorry to hear.....

And you need to take care of your own mental health, too. Sounds overwhelming.
  #35  
Old 08-29-2018, 05:55 AM
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It sounds awful to have to be dealing with so much. You say you've discussed it with your sister, is her sister involved? Sometimes, I think it can help if others are there to share the stress/decision making.
  #36  
Old 08-29-2018, 06:20 AM
kaylasdad99 kaylasdad99 is offline
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Kaylasauntie (that is, the one who shares Kayla’s birthday; I mean the one on her mother’s side who shares Kayla’s birthday) has herself recently checked herself into an elder-care facility 300 miles north of us. My sister moved to Michigan a few years back. The only sister I have still in California doesn’t really care for kaylasmom.
  #37  
Old 08-29-2018, 06:24 AM
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Quote:
Originally Posted by kaylasdad99 View Post
The only sister I have still in California doesn’t really care for kaylasmom.
But that's not really the point, is it? It's whether she cares for you and can offer you some support.
I had a friend whose mother got Alzheimer's and she had her sister and I think her mum had siblings, so it all didn't just fall on one person.
  #38  
Old 08-29-2018, 06:26 AM
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Broomstick Broomstick is offline
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Originally Posted by Quartz View Post
Make sure you have time to yourself. When my father had dementia, he visited a care centre twice a week for the whole day.
^ This.. If you don't take care of yourself you can't take anyone else. Also, our society has a very, very bad habit of neglecting and ignoring the needs of caregivers.

Quote:
You really do need that Power of Attorney.
^ This.

Quote:
Something else: think about the appearance of elder abuse. You're not going to do it, of course, but over here all it takes is for some over-zealous doctor or social worker to draw the wrong conclusion and you'd be in a world of trouble.
^ And this. Very much this. Between the broken ankle and the bruising, and her paranoia, it WILL happen. She is going to tell someone that you did something to her (like her notion you broke her ankle to ship her off the hospital) and then you're going to lose control of the situation.

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Originally Posted by Jeff Lichtman View Post
I'm so sorry about all of this. I'm amazed that you've gotten this far without collapsing.
Same. I was exhausted just reading it.

Quote:
Does kaylasmom have an advanced directive? If so, there may be something in it about your making medical decisions for her should she be unable to make them for herself. If so, the fact that she has dementia may effectively give you power of attorney.

If you don't have a community property marriage, you should also look into getting financial power of attorney.
Do NOT assume anything! Do NOT assume anything is automatic!

Regardless of what sort of marriage you have get that power of attorney as soon as possible. Due to her condition you might have to go in front of a judge for that, as her mental capabilities are already compromised.

I strongly suggest you consult with a lawyer family with family law in your state. Yes, it will cost you a little bit of money but it will save you a great deal fo grief and money down the line. He/she will help you set up power of attorney, warn you of pitfalls, help with future planning, and so forth. It will be money well spent.

Despite 30 years of marriage I encountered problems with managing my spouse's final months. Having a legal document that said I could make decisions on his behalf greatly simplified many things.
  #39  
Old 08-29-2018, 06:37 AM
Razncain Razncain is offline
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kaylasdad99, judging from your your username, is there a daughter that can be of some help to you that is near by? Or would you rather not burden her? If not her, any of your wife’s siblings or yours that is of retirement age, or any friends or neighbors that could possibly relieve you on a regular basis? Your top priority is actually taking care of yourself right now. You won’t be any good to your wife if you are the full-time caretaker and not getting any relief yourself. I was fortunate enough to where my siblings and I didn’t move off, but stayed in the same city. And with one brother retiring early, and my small biz pretty much running itself, it allows us both every other month to take care of my dad then have a full month off. Not having that, I wouldn’t want to speculate of what would have came of us.

Last edited by Razncain; 08-29-2018 at 06:38 AM.
  #40  
Old 08-29-2018, 09:28 AM
TheFaerie TheFaerie is offline
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This is heartbreaking. I've always admired you, Kaylasdadand how deeply you care for your family. Please know that this internet person cares about you.
  #41  
Old 08-29-2018, 10:15 AM
Steve McQwark Steve McQwark is offline
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Geez, man, I'm so sorry to read about all the problems your wife is having. It looks like you've spent a long time caring for and helping your wife, but I suspect you are entering uncharted territory with the dementia. My wife is farther along in her dementia than your wife, so if you don't mind a little advice.

If you haven't done it already, go to the alzheimer association's webpage https://www.alz.org/; they have all kinds of helpful information.

As many other people have already said - take care of the legal documents and take care of yourself.

You've already seen it with the accusations of intentionally hurting her and having an affair, but prepare yourself to be hurt emotionally and, hopefully not, but possibly physically as well. I've been fortunate that my wife has never physically lashed out, but I've been told many times and in many ways what a horrible person I am. Things she never would have said before, but the fear and confusion change her reactions. Even knowing it's the disease talking, it still hurts.

Make sure you have someone to confide in and vent to. You need a place to let out the anger and frustration that will build up. Not necessarily about your wife, but about the events and changes that are happening.

Feel free to PM me if you have any questions or you just want to vent to someone anonymously.
  #42  
Old 08-29-2018, 10:51 AM
Anny Middon Anny Middon is offline
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You have my profound sympathies. I can only imagine how difficult this is for you.

In addition to all the great advice already given, I suggest you contact your local department of senior services. I think this is typically a county-level function, but may be city- or state-level in your locale. Often they don't really have much to provide, but sometimes they have programs for adult day care for free or reduced rates. If you need help transporting your wife to doctors' offices, they may be able to provide a ride in a van equipped to handle wheelchairs.

Take care of yourself. Caregiving is a very difficult and draining responsibility (as I'm sure you know).
  #43  
Old 08-29-2018, 10:59 AM
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ZipperJJ ZipperJJ is offline
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My sympathies to you. As I was reading I thought "this absolutely belongs in the Pit. Fuck all this stuff that keeps happening to your wife!" You're a great partner...and as others have said, be sure to take care of yourself too.
  #44  
Old 08-29-2018, 11:05 AM
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asahi asahi is offline
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I have no advice, only my sympathies. My mother went through a lot when she was dealing with my father's decline (stroke) while I was away at school. Dealing with a spouse in a slow state of decline is unbelievably taxing.
  #45  
Old 08-29-2018, 11:07 AM
Jasmine Jasmine is offline
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I'm so sorry for the physical and emotional suffering! I certainly am not qualified to suggest what you should do, but I do know that you should not suffer any guilt for whatever decision you make. You obviously love her dearly and have been unendingly loyal to her as a husband. You want what's best for her, and for that you should only garner praise and admiration!
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  #46  
Old 08-29-2018, 11:20 AM
not what you'd expect not what you'd expect is offline
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I'm so sorry for all of the problems your family is experiencing. It sounds just heart breaking and depressing.

Vitas has a location in your area and they offer some respite care for care givers and other services. Maybe they could be a resource for you?

1-844-457-6373 is the phone number I found for the Anaheim location.

I wish you the very best.
  #47  
Old 08-29-2018, 11:37 AM
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Thoughts and prayers are always insufficient...but you have mine, k'sdad. Mad love, my friend.
  #48  
Old 08-29-2018, 11:58 AM
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TroutMan TroutMan is online now
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Reading your post, I alternated between sadness for what you're going through and admiration for how you're managing it. Your love and compassion really come through. Hang in there, and best wishes to your wife on managing it all too.
  #49  
Old 08-29-2018, 12:01 PM
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Sunny Daze Sunny Daze is offline
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First up, full sympathies. You're in a horrible situation. I am so sorry to hear all of this.

Have you considered placing her in a home? It sounds like she is moving beyond the care level you will be able to provide by yourself.

Best wishes.
  #50  
Old 08-29-2018, 12:48 PM
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Miller Miller is offline
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My condolences for what you're going through. I'm going to move this to MPSIMS, not because it's mundane or pointless, but because that forum is better suited to sympathy and advice than the Pit.
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