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Old 03-06-2014, 06:29 PM   #21
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It must be hardwired into people - this refusal to see our own decline as the real "loss of independence" which we all fear and loathe, and instead blame treatments/facilities/caregivers.

Not that I'm letting bad facilities off the hook - there no doubt are places where certain amongst the help are just waiting for the old lady to forget she's wearing a diamond bracelet.

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She did live in assisted living for the last six months. FIL didn't want to face that possibility and saw it as losing his independence.
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Old 03-06-2014, 07:19 PM   #22
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This is a topic that hits very close to home for me, as my husband was diagnosed last year with Alzheimer's at the age of 59. It doesn't run in his family, so it was quite a shock, although the signs had been there for a couple years. He was a corporate CFO for several decades and lost his job 3 years ago for reasons that are now very obvious, but were not so obvious at the time. We are now both retired earlier than expected at the ages of 58 and 60. Among many other things, it has really changed the landscape of our upcoming retirement years. I feel like I'm just now getting a handle on how our financial future looks, but there are many questions there that weren't there before - how long will he live, will he need long-term care (very probably), what additional health care costs will be involved? Fortunately, young-age Alzheimer's is fast-tracked for SSDI, and he was able to qualify within 6 weeks of his diagnosis. This gives us a base income to supplement withdrawals from our retirement savings. But I'm a planner, and although I feel fairly OK about our ability to live on the money we have available to us, the future looks like a big fog with so many unknowns. It really puts a different spin on retirement planning. I've talked to an estate attorney and done what I can to put our ducks in a row. Fortunately I've been handling our money and investments for several years now and feel very comfortable with that. Just afraid of the future and not knowing how things will go. Goes to show that no matter how carefully we try to plan for the future, life can suddenly throw a monkey wrench into all our careful planning. At this point I am learning to take things a day at a time, which is against my nature, but overall not a bad way to live your life.
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Old 03-07-2014, 12:38 AM   #23
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This is a topic that hits very close to home for me, as my husband was diagnosed last year with Alzheimer's at the age of 59. It doesn't run in his family, so it was quite a shock, although the signs had been there for a couple years. He was a corporate CFO for several decades and lost his job 3 years ago for reasons that are now very obvious, but were not so obvious at the time. We are now both retired earlier than expected at the ages of 58 and 60. Among many other things, it has really changed the landscape of our upcoming retirement years. I feel like I'm just now getting a handle on how our financial future looks, but there are many questions there that weren't there before - how long will he live, will he need long-term care (very probably), what additional health care costs will be involved? Fortunately, young-age Alzheimer's is fast-tracked for SSDI, and he was able to qualify within 6 weeks of his diagnosis. This gives us a base income to supplement withdrawals from our retirement savings. But I'm a planner, and although I feel fairly OK about our ability to live on the money we have available to us, the future looks like a big fog with so many unknowns. It really puts a different spin on retirement planning. I've talked to an estate attorney and done what I can to put our ducks in a row. Fortunately I've been handling our money and investments for several years now and feel very comfortable with that. Just afraid of the future and not knowing how things will go. Goes to show that no matter how carefully we try to plan for the future, life can suddenly throw a monkey wrench into all our careful planning. At this point I am learning to take things a day at a time, which is against my nature, but overall not a bad way to live your life.

Very tough situation. Thanks for sharing.
I wish you the very best.
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Old 03-07-2014, 09:35 AM   #24
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Very tough situation. Thanks for sharing.
I wish you the very best.
Very tough indeed. My DF's best friend had to be put in a memory unit prior to 60. Very difficult situation. DF would always bring him a new box of golf balls whenever he could visit. He didn't know what they were, but enjoyed the few memories they brought back.

A couple of idea's that I've seen help folks suffering:
1. Mom always remember her children, grandchildren and a few other memories. My sister got one of those electronic picture frames, filled it with old photos that she knew mom would recognize. It provided calm thoughts for mom, oh look there's Billy, remember him.
2. Mom was a golfer till she could no longer play. She still loved watching the SR. tour, faces, names she recognized. Lee Trevino, helped my mom tremendously.
3. For much of her life we lived in the town the LLWS(Little League World Series) was played in. She didn't understand the game, but she did remember the scenery. That provided many hours of calmer times.
4. There was a recent news show promoting music, that was part of the ill persons life. You could see these ill people light up, hearing music they could identify with.
5. There are support groups, they may help you or other family.

I hope any of these or other simple techniques, can help folks suffering from these terrible diseases.
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Old 03-08-2014, 05:54 AM   #25
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We always hear about "This happened to my parents," but how would a person living alone recognize the signs in themselves? I've always heard "it's not that you can't find the car keys - it's that you've forgotten what the car keys are for" but by that time, you must be pretty far gone. What should send someone to the Dr. for themselves?

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Old 03-08-2014, 06:25 AM   #26
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We always hear about "This happened to my parents," but how would a person living alone recognize the signs in themselves? I've always heard "it's not that you can't find the car keys - it's that you've forgotten what the car keys are for" but by that time, you must be pretty far gone. What should send someone to the Dr. for themselves?

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During a visit to my doctor, I asked him, "How do you determine whether or not an older person should be put in an old age home?"
"Well," he said, "we fill up a bathtub, then we offer a teaspoon, a teacup & a bucket to the person to empty the bathtub."
"Oh, I understand," I said. "A normal person would use the bucket because it is bigger than the spoon or the teacup."
"No," he said. "A normal person would pull the plug. Do you want a bed near the window?"
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Old 03-08-2014, 07:47 AM   #27
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That's the main reason we're moving to a CCRC around the time I'm 70 or so. Some relatives snicker, seeing it as moving ourselves to an Old Folk's Home.

I see it as taking responsibility for ourselves. No one else will.
That's surprising to me since we view 70 as not really that old. Now I understand that old age varies with genetics, etc, but I am 70 and we are no way ready to move into one of the local CCRC's. We are still very active and have lots of friends our age who are too.

I still work part time and fix (when needed) just about everything around here including the cars. DW has COPD and requires some meds to stay active, but she gets around very well. We feel we are at least a decade away from looking into a different lifestyle, unless something goes downhill pretty quick.
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Old 03-08-2014, 08:08 AM   #28
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Drug Accumulation
People take medications for everything from common disorders, such as high blood pressure, to more debilitating illnesses, like Parkinson's disease. As you age, your liver's ability to filter chemicals and your kidneys' chemical excretion rate decreases. Thus, toxins may build up in your system. One common side effect of this accumulation is a decline in cognitive functioning that mirrors dementia caused by diseases such as Alzheimer's. Toxic levels of drugs such as antidepressants, sedatives, cardiovascular drugs and anti-anxiety medications may produce dementia-like symptoms (e.g. confusion, memory loss and paranoia). Your chances of suffering dementia symptoms from prescription drugs increase if you are taking more than one drug at once, especially if you have decreased liver and/or kidney functioning.
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Old 03-08-2014, 08:22 AM   #29
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That's surprising to me since we view 70 as not really that old. Now I understand that old age varies with genetics, etc, but I am 70 and we are no way ready to move into one of the local CCRC's. We are still very active and have lots of friends our age who are too.
Oh, I agree completely. I don't see the move as restricting activities at all. What we're looking at is a single-family house and don't anticipate that our lifestyle will change a bit other than having more free time. It's just that doing so puts us in a position so that if/when serious health issues do arise we're better able to deal with them. And all the home maintenance issues go away so the time we now spend on that will be free to do other stuff.

When my mother moved to a CCRC she was even more active than when she had the house in part because she was active in the community there and she didn't have to deal with home maintenance issues.

Dealing with FIL's issues was an eye-opener. This was a guy who went from almost fully independent living in a house to being bedridden in the span of about four months. There were warning signs that it was coming of course. By that time it would have been impossible for him to do by himself.

That's one reason we want to make that move before we have to. All of our older relatives had a lot of help from children, sibling's children, etc. in moving when they had to. That help will not be available to us because of distance. While we enjoy the house we're in we don't have any strong emotional attachment to it. So the idea is to put ourselves in a position where help is available if needed and hope that we never actually do need it.
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Old 03-08-2014, 08:28 AM   #30
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I think there may be some confusion about CCRC's... Not all are assisted living or nursing homes... or places to go to die.

As we're in our late 70's we've been living in our "Liberty Village" complex since 2004. It includes the regular homes that we live in, 1500 to 2000 sf, and the rest of the "steps"... Apartments, Assisted Living, Rehab Center, Nursing Home and Alzheimer unit.

We still have a home in a Florida Community, and a camp on a lake here in IL, and still bike, canoe, maintain cars, do repairs, and continually maintain the seawall... (the ongoing project). ... and still party, though not as late as before...

Getting older doesn't mean we lie down to die, but CCRC living does make life simpler as landscaping, lawns, and snow removal are done for us, and the homes are designed with the amenities that make getting around easier for any kind of disability.

The nice part of this is that we can integrate into the community, and have the peace that comes with knowing that if anything happens healthwise, we won't have to make major changes, or uproot the social part of our lives. We're guaranteed access to any other part of the community, and won't have to put a burden on our children.

Everyone ages at a different rate. Age 75 was bit of a turning point for us. Some afternnon naps, less auto travel, more TV... and overall, more quiet time for computers, reading and of course, TV.. The bike rides down to 5 miles at a time rather than 15, the paddling for only an hour at a time, and walking the mall replaces our walks in the park.

So now, with the approaching dementia... a matter of easing into the late years, rather than a sudden upset in lifestyle. A big part of the comfort in this period of transition, comes from being with people our own age, and not trying to keep up with a younger neighborhood.

It's not for everyone. We have some friends and neighbors who still do world travel at age 90, and unfortunately many who have already had to make the move into the apartments... (meals, transportation and housekeeping included) and others who are now in assisted living. Many of these are people younger than us.

It's what I call Phase II... Lower expenses, less activity, and most important... security.
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Old 03-08-2014, 08:34 AM   #31
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I think there may be some confusion about CCRC's... Not all are assisted living or nursing homes... or places to go to die.
Very well described, better than I was able to. Of course you've "been there done that". But what you describe is how I envision things going.
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Old 03-08-2014, 09:48 AM   #32
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I figure when I start noticing the people around me muttering about "youth in Asia" I'll be able to take the hint.
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Old 03-16-2014, 11:46 AM   #33
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We always hear about "This happened to my parents," but how would a person living alone recognize the signs in themselves? I've always heard "it's not that you can't find the car keys - it's that you've forgotten what the car keys are for" but by that time, you must be pretty far gone. What should send someone to the Dr. for themselves?
My father noticed his "slipping memory" in mid-2008 and consulted his primary-care physician, who referred him to a consult with a neurologist.

Dad filed the referral info in the wrong folder in his cabinet and never touched it again. As near as I can tell, his doctor didn't follow up or Dad wouldn't let him "turn him into a lab rat" (Dad's popular phrase in late 2009). Then Dad stopped going to his primary care doctor.

I was able to reconstruct these events in 2011 after Dad was in his care facility, when I was going through his file cabinets. Somewhere in between noticing his "slipping memory" and reaching his "lab rat" phase, Dad's cognition slipped over the line to the point where he decided that he no longer had a problem.

Otherwise I think most dementia issues are referred by the spouse or other family... if you're lucky. In our case it was a phone call from the emergency room surgeon.
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Old 03-16-2014, 01:02 PM   #34
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OK, I think I know what a CCRC is now.

Is there a thread that discusses the costs of living in such a facility?

I have to program this into our annual expense projections.
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Old 03-16-2014, 01:18 PM   #35
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OK, I think I know what a CCRC is now.

Is there a thread that discusses the costs of living in such a facility?

I have to program this into our annual expense projections.
Gypsy Ed, here are a few threads you might find interesting

Self-insuring for LTC????
LTC Poll
Long Term Care, Real Cost , Real Inflation
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Old 03-16-2014, 01:52 PM   #36
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Thanks, Mike. I knew it was there somewhere.
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Old 03-16-2014, 07:47 PM   #37
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If anyone has seen the current movie "Nebraska", it hit uncomfortably close to home. My dad had dementia for about the last 10 years of his life. For a while, based on junk mail, he became convinced that he had won a Cadillac from Pulishers Clearing House and all he had to do was get to their offices and "claim" it. My brother and I had several discussions on the best way to handle the situation.
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Old 03-16-2014, 11:27 PM   #38
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OK, I think I know what a CCRC is now.

Is there a thread that discusses the costs of living in such a facility?

I have to program this into our annual expense projections.
If it helps, Dad's full care facility (in Denver) is charging $220/day for a semi-private room. (They raised the fee from $210/day to $220/day in 2013.) There are also additional Medicare charges for doctor's exams, occupational therapy, physical therapy, and speech therapy. Dad's supplemental Medicare insurance handles that 20% copay, which as near as I can tell is another $50-$100 per month. (I only see an occasional explanation of benefits for that.) He's also on prescriptions for typical blood-pressure and cognition medications that are covered by his prescription insurance, but those copays are about $40/month.

Ironically if something happens at the care facility that sends you to the hospital, Medicare can kick in to cover the hospital stay plus another 4-6 weeks of "skilled nursing/rehab" back at the care facility. There are limits on how often that's covered per year, of course.

Long-term care insurance has paid all of Dad's medical expenses for the past three years, but the policy reaches its cap by the end of 2014.

He also spends about $1000-$1500 per year on toiletries, clothing, haircuts, snacks, dental cleanings, and restaurant visits. Some expenses go down even though the medical/health expenses go way up.
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Old 03-17-2014, 09:34 AM   #39
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My Mother was never diagnosed with dementia, but it's pretty clear she had it during the last 4 years of her life after Dad died. I don't know how much was a real "medical" condition, and how much was due to her emphysema (not getting enough oxygen, even with an oxygen tank which she loathed) and anorexia (she would eat one bite and refuse to take any more; she was 5 feet 1 inch tall and weighed about 75 pounds when she died). One thing I recall was her sending checks to every charity that sent her mailing labels, and buying, from mail-order catalogs, all kinds of silly little knick-knacks which were not even her "style."

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If anyone has seen the current movie "Nebraska", it hit uncomfortably close to home. My dad had dementia for about the last 10 years of his life. For a while, based on junk mail, he became convinced that he had won a Cadillac from Pulishers Clearing House and all he had to do was get to their offices and "claim" it. My brother and I had several discussions on the best way to handle the situation.
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Old 03-17-2014, 12:11 PM   #40
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My father noticed his "slipping memory" in mid-2008 and consulted his primary-care physician, who referred him to a consult with a neurologist.

Dad filed the referral info in the wrong folder in his cabinet and never touched it again. As near as I can tell, his doctor didn't follow up or Dad wouldn't let him "turn him into a lab rat" (Dad's popular phrase in late 2009). Then Dad stopped going to his primary care doctor.

I was able to reconstruct these events in 2011 after Dad was in his care facility, when I was going through his file cabinets. Somewhere in between noticing his "slipping memory" and reaching his "lab rat" phase, Dad's cognition slipped over the line to the point where he decided that he no longer had a problem.

Otherwise I think most dementia issues are referred by the spouse or other family... if you're lucky. In our case it was a phone call from the emergency room surgeon.
My goodness, Nords. Your post hit home so hard is hurts.

We noticed Dad slipping about 4 years ago. He was complaining about it too. 2 years ago, I took over his finances because it was too much for him. Amazingly, he did pretty well with it right up until then. Luckily, some of the bank stuff he did was handled by honest folks with fiduciary responsibility. They got him deferred fixed annuities with nursing home riders. I wasn't thrilled with what Dad did, but thankfully, there's no major damage. In speaking with the bank folks, they recognized that Dad was slipping and got him the most conservative, accessible annuity possible -- because Dad insisted he wanted an annuity, darn it! No other answer would make Dad happy.

After Dad mentioned this, I was able to take over his finances and get a POA with Dad's blessing. Dad fought it a bit when we stopped the statements from coming to him. We had to change the address, because he would get a statement, not understand it, and drive to the bank to discuss it. All this, even though my siblings and I reminded him HUNDREDS of times to come to me to discuss it. Very frustrating.

And then there were the overpayment checks he got when he paid other bills 2 or 3 times. I've found a few of those too and was able to sort that out.

2 years ago we got a diagnosis for Dad (right before I got the POA) from a VA hospital. Some things fell through the cracks and my siblings thought it was just "mild memory loss." HIPA rules make it so hard, especially with the VA which adds another layer of obfuscation.

In any case, during the latest crisis of moving Dad to memory care, I finally found time to look though the 4 boxes of files I got from Dad 1 year ago. I just didn't have time to unsort them. I wish the ALZ.ORG site would add "misplaced filing" as one of the signs of ALZ, because like Nords, this is what we saw.

So, I'm going through a folder labeled "insurance". And right there, among some insurance invoices were a few photos, and in between the photos, and innocent piece of paper folded and stored from the VA which clearly had the results of his test: "Alzheimers of the late onset type."

My eyes opened. My siblings and I all knew this, but to just see it in black and white finally woke us up and got us into action.

I just want to say that even though the person who suffers themselves may be in denial, it is very typical that families are in denial too. For 2 years we had an answer for every goofy thing dad did. (Lack of sleep, back pain, bad medications, improperly taken medications, etc.) All this was denial. As a matter of fact, the lack of sleep was actually due to the ALZ (see another post above about waking up in the middle of the night thinking it is day -- yeah, we know about that too.)
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