Alzheimers's - Update

[imoldernu]

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?

Amethyst

"Should" and "Will" are two different questions. Can't speak for the millions of other others who are going through this, but know my own situation... and the answer to "Will" is ... Nothing
......................................................................
.

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?"

 

[aja8888]

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.

 

[franco45]

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.

 

[Walt34]

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.

 

[imoldernu]

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.

 

[Walt34]

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.

 

[braumeister]

I figure when I start noticing the people around me muttering about "youth in Asia" I'll be able to take the hint.

 

[Nords]

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.

 

[Ed_The_Gypsy]

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.

 

[MichaelB]

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

http://www.early-retirement.org/forums/f28/self-insuring-for-ltc-67855.html
http://www.early-retirement.org/forums/f28/ltc-poll-67962.html
http://www.early-retirement.org/forums/f28/long-term-care-real-cost-real-inflation-70943.html

 

[Ed_The_Gypsy]

Thanks, Mike. I knew it was there somewhere.

 

[chilkoot]

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.

 

[Nords]

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.

 

[Amethyst]

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."

Amethyst

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.

 

[JoeWras]

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.)

 

[JoeWras]

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.)

Similar to Dad's care costs. In today's dollars, I'd just budget $250 per day. That might get you a private room in some locations.

 

[braumeister]

FWIW, I was paying $180/day in southern Ohio in 2012. Private room, pretty nice facility.

 

[JoeWras]

FWIW, I was paying $180/day in southern Ohio in 2012. Private room, pretty nice facility.

Yes. Costs vary significantly based on location and provider, but especially location.

 

[MRG]

When I was checking into this for my dad, I found a county breakdown for the state he lived in. Don't remember where, other then it was on that state's website, probably something to do with elder care.
MRG

 

[BTravlin]

I'm writing this post at my in-laws kitchen table. We are waiting to hear from Hosparus about getting my MIL a chest x-ray so that she can be admitted to and assisted living facility. She was diagnosed with Lewy Body Dementia about two months ago and doctor said she had one, maybe two years to live at best.

DW and I came back home from Mexico ten days ago to attend our sons college graduation commencement. We were only planning on staying five days for the event and to visit family and friends. Upon arrival it was evident that FIL had been lying to us about her condition and how they were doing. MIL was only able to get around using a walker with him right behind to prevent her from falling. Monday morning she fell on the way to the kitchen and thankfully was not hurt. Since then has lost all use of her legs and has been confined to bed. We had Hosparus come out and do an evaluation and they accepted her into the program. They have been wonderful providing a wheelchair, potty chair and bedside table. We knew she was having memory and mobility issues over two years ago and tried to get her the proper care but FIL was in denial and fought us every step of the way. FIL is now 80 and MIL is 79. FIL has diabetes, macular degeneration and degenerative joint disease in hips and knees. His mental faculties are fairly good but it obvious that he is having issues now as well by the abundance of notes stuck to every surface reminding him of all manner of day to day info. He was adamant that they could care for themselves and would not consider either one or both of them moving to assisted living. He was wrong as the house is absolutely filthy from one end to the other and ants in kitchens and bathrooms. Financial records are spread around various rooms in the house. Junk mail, newspapers, magazines and all manner of other assorted papers stacked all over the place.

After the fall and loss of mobility, it was a real struggle getting MIL from bed to bathroom several times a day. FIL finally admits action is needed and agrees it is time for her to go to some type of facility but he's still fine taking care of himself. Right. We call Hosparus in. They quickly provide the potty chair, bedside table and wheelchair. FIL now says no to moving her and that he will now be able to care for her on his own. DW and I elect the tough love option and refuse to assist him. Within 24 hours he gives up and again agrees to admit her to a facility. MIL then states she will not go unless he goes too. FIL argues with her and us but finally relents as MIL guilts him into acceptance.

We have a very nice progressive care facility lined up and her evaluation shows she needs to be in a skilled care unit. We tried to get FIL to move into a 1 BR assisted living unit on the next floor up so that he would have more space and be more comfortable but he says they will share a 2 bed skilled care unit. It's not the ideal situation for him but our primary concern right now is the safety and well-being of MIL. We have packed her things and suggested he get some things packed too. He refused saying that he will be back and forth between the facility and their home and he'll get his stuff together later. We fully expect that he will backtrack as soon as we leave town and he will visit MIL but actually spend little time there himself.

DW is distraught but has resigned herself to the fact that we must care for her mother first and deal with him later. We will probably end up having to go the adult protective order route with him at some point in the very near future.

They are fortunate that they did do a good job of providing for their retirement and have a net worth of $1.2 million. Skilled care for her will run $82k per year but we doubt she will last more than a year given her rapid decline. The facility is working up a reduced rate for him sharing a skilled care unit with her. Even if it ends up being $130k per year they will still be fine financially. They also own their home free and clear which should bring $140k if it were in decent shape but who knows in it's present condition.

This has been a valuable learning experience for DW and I as we have vowed to do our best to avoid putting our children through such an ordeal. We have decided to each write ourselves a letter documenting what we have been through and promising not to do the same. We will give these letters to our children and tell them to put them in front of us when our time comes.

My sympathies to all of you and your loved ones who are dealing with similar situations.

 

[imoldernu]

I'm writing this post at my in-laws kitchen table. .............
.............
My sympathies to all of you and your loved ones who are dealing with similar situations.

Thank you for taking the time to share this. As DW and I near this age, we are evermore aware of the realities. We know it is coming, and try to prepare as best we can for the probability of long term care, and eventual passing from the scene. The details of the in between time... that you have so well described, is the part of life that most people have trouble facing. Unfortunately, at this time of life... the weight of worry and care is vested on the children and the family, who are facing the saddest part of later years.

You and your DW are doing a magnificent job in dealing with this reality. I commend your wisdom in drawing back to the overview of what can be done, and seeing the paths to your parents' care and financial situation. At our age, we have too often seen a drawback from the situation on the part of the children. This almost always works to the disadvantage of the rest of the family, and the parents... both psychologically and financially. Too often the elderly suffer uncecessarily because no one has stepped up to help them in their decisions.

So yes, we hope that as we become more restricted in our options, that we'll be able to count on our children to help. The interim period between leaving the homestead, disposing of the bills, belongings and ties to an active society... and entering senior care... is likely to be the most traumatic part of the children caregivers' lives, but it is finite.

Again, thank you for sharing your story, great respect for your efforts and best wishes for a good outcome.

 

[H2ODude]

Btravlin: Thanks for the post and being there for your parents. These are tough decisions and rarely are they easy or does the decision feel all that good once made. We've dealt with hospice and parents and have cared for MIL in our home for many years but could no longer do it. As I ponder our late years my hope is that finances will not be an issue but that our children will help guide us and protect us from ourselves. One thing I do know, we will not become a full time presence in their home or hopefully for that matter, their lives.

In the end you have to do what you believe is right; the trick is to not sacrifice your own (and your spouse's) well being in the process. Best of luck.

 

[MichaelB]

DW is distraught but has resigned herself to the fact that we must care for her mother first and deal with him later. We will probably end up having to go the adult protective order route with him at some point in the very near future.

A tough situation, which you seem to be handling well so far. Both your in-laws need help, and so do you. So far, with the skilled care facility you have a good option for the MIL. Because you don't live close by you might find it useful to establish a relationship with someone there so you can get status updates by phone.

The municipality or county where they live may have some senior / social services that can be a great ally. Perhaps you can arrange with them for a visiting nurse or social worker to stop by once a week. They can check the FIL home for hygiene and make sure he is eating and taking any prescription meds.

Another thing you might find useful, especially if you think he may need care, is a professional assessment by an agency that provides skilled nursing care. They will send a trained nurse to interview the FIL and inspect the house, then provide you with an analysis and risk assessment of how feasible it is for him to remain alone. This can help when dealing with the FIL, other relatives, and also give you an idea of what you can do to help him. It is also a good starting point if remaining at home is too risky.

A long hard road ahead, it helps to have allies. Good luck with this.

This has been a valuable learning experience for DW and I as we have vowed to do our best to avoid putting our children through such an ordeal. We have decided to each write ourselves a letter documenting what we have been through and promising not to do the same. We will give these letters to our children and tell them to put them in front of us when our time comes.

I took a workshop for caregivers, and this was the most common discussion topic during coffee breaks.

I decided to involve my children is some of the activity, discussion and decision making related to caring for an aunt and then my mother. It was an opportunity to teach them how to help us if the need arises, but also my way of communicating with them, showing what I don't want them to have to do with us, and how (hopefully) how to draw boundaries and place limits. Now's the time to do that...

 

[rodi]

Btravlin - I can relate to your post. We were in a similar position - one parent was in crisis, the other was close to crisis. In our case it was my FIL who was in crisis and neede to go to a facility, and MIL was having issues - but was not an emergency. She fought us every step.
FIL has since passed. And now MIL is reaching crisis point so we'll be forcing the issue of a nursing home in the near future. We've already been through the legal process (my husband received legal guardianship for both.... quite a legal process.)

I love the idea of writing letters to yourself to be used by your children in the future. I will be using that idea.

 

[Bestwifeever]

Really helpful thread.

I recently told DH if/when our kids suggest we need assisted living, we will do it. He said, good idea, unless we don't. Ummm....