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Less obvious costs of Alzheimer's
LadyTexan
Posted: Sunday, December 8, 2019 7:22 AM
Joined: 12/21/2018
Posts: 601


Most of us are familiar with the obvious costs of Alzheimer's such as memory care, in home care, medication, expensive testing, appointments with specialists. At the same time, there may be reduced income due to early retirement of the PWD, early retirement of the caregiver, and reduced contributions into retirement accounts. 

I am also seeing less obvious costs, that by themselves may not seem like much, but I am sure add up over time:

- costs of cleaning products. When my husband does the laundry, he doesn't measure the detergent. It seems like he is pouring in half the bottle of detergent. DH may run the dishwasher with 2 dishes in it. Other times dirty dishes end up in the cabinet with the clean dishes, so I rewash many dishes to sterilize them. 

- damaged clothes. DH tries to man-handle himself into and out of clothes but has problems with the buttons. He loses patience and will throw garments away claiming "they don't work".

- broken and lost dishes and other items. DH's motor skills are impaired and he often drops glassware. We have transitioned to paper plates and plastic ware. DH has thrown away utensils and the TV remote. 

- spilled and spoiled food. Sugar ends up everywhere in the kitchen. Hopefully some makes it into his coffee cup. The spoiled food happens less frequently now, but DH used to leave the fridge open on occasion.

The medication (namzeric and mirtazipine) has helped. DH's abstinence from alcohol has helped. I try to pre-empt the laundry and dishes to reduce the waste.

Have you noticed any less obvious costs? What solutions are you using to combat them?

-LT


Ed1937
Posted: Sunday, December 8, 2019 7:32 AM
Joined: 4/2/2018
Posts: 3078


I have only encountered a few of them, probably because I do most everything. The paper plates and throw away silverware was a good move. You might want to add plastic glasses. We have to adapt,
ScottyTom
Posted: Sunday, December 8, 2019 7:48 AM
Joined: 5/12/2016
Posts: 70


My wife too likes to do the laundry.  It gives her a feeling that she can contribute and do something.  But, she too was using huge amounts of detergent.  The solution is the "pods" laundry detergent.  Just one per load.    I've also incurred expenses in odd matters.  One was the purchase of a "radio" with a playlist of music in MP3 format designed especially for dementia patients.  It simply involves using a large on/off switch.  Then there was the effort to find phones she can use (none were successful until Alexa finally helped- she can simply say "Alexa, call xxx).  And then there was the dementia friendly TV controller (minimal help - even the five buttons are beyond her).  Yes, all these things add up for someone like us.  I retired early and we downsized and live on a limited income.
IWBH1990
Posted: Sunday, December 8, 2019 7:55 AM
Joined: 8/5/2019
Posts: 12


My DW used to fill the laundry soap containers, and the liquid clothes softener to the top of the plastic cup that comes with the container, when you really only need about 1/3-1/2 a cup (also note the detergent that I use increased the size of the cup a while back, so more waste). For a while I tried to out-smart her by diluting both soap and softener.  Now she does not do the laundry anymore, and I wish for the "good old days" of diluting the soap.
harshedbuzz
Posted: Sunday, December 8, 2019 8:28 AM
Joined: 3/6/2017
Posts: 2265


Yes.

The food wasted when he got into the battle of wills about eating. The cost of snack food when those are the only calories that entice him.

The wine, coffee and milk wasted when he spilled it on himself because he refused to sit up to eat or drink as if he'd forgotten how gravity works.

The cleaning supplies to deal with the spilled beverages, stained clothing and incontinence.

The cost of simpler electronics like remotes and flip phones he couldn't learn to operate.

The replacement costs for thrown out hearing aids and broken headphones.

Pay-per-view items ordered before we put parental controls on the DVR. I thought parental controls were for me to use as a parent- not on one.
Jo C.
Posted: Sunday, December 8, 2019 8:46 AM
Joined: 12/9/2011
Posts: 11012


Eyeglasses and hearing aids that "disappear," never to be found no matter how hard one looks.

Finding the LO has gone into the refrigerator and has thrown fresh fruits and veggies into the outside trash and now unusable and more needs to be bought.

Cost of wheelchair transport when LO can no longer be transferred into own car to go to appointments.

OTC meds.

AND . . . the high cost of insurance co-pays and deductibles and items insurance decides not to cover.

Ambulance charges way beyond what insurance covers.

Adaptable clothing.

The high cost of incontinence supplies.

The cost of pre-wet microwaveable bath clothes when showers, baths and regular wash cloths are refused.

Carpet cleaning

Adaptable lift chairs when one cannot rise off of regular chair any longer.

Special door knobs, night lighting, alert mats for next to the bed, locks for doors and cupboards.

But oh boy; the stunning cost of meds when a LO on Medicare hits that, "donut hole."  Had to mention that with mother and her husband, both with dementia at the same time and both hitting that dread donut hole. 

Cost of gas for frequent trips to so many different doctors and other needs.


Crushed
Posted: Sunday, December 8, 2019 10:01 AM
Joined: 2/2/2014
Posts: 5790


Pharmaceutical  costs for dementia are actually fairly low unless you are tricked in scams like Namenda

We have colorful plastic plates and cups from our travels so dish breakage was not an issue

She would often lose one earring of a pair. If they were at all expensive (more than $20) I made a pendant from the remaining earring.  DW was the Imelda Markos of  inexpensive earrings,

 In my personal experience labor costs whether paid or donated far exceeded anything else.  I had always done all the cooking and laundry in our house.  I bought lots of cheap bifocals over the years.  Right now the special foods I take to MC cost about $6 a day.  But her clothing is very cheap.  I buy colorful "scrub" pants for her to go with her infinite supply of shirts.  We always called them "Doctor pants".  

 


SuzD
Posted: Sunday, December 8, 2019 10:13 AM
Joined: 3/26/2018
Posts: 95


Good morning Crushed,  I’m not familiar with a Scam around Namenda, my DH is on this med.  Would you give me some information on this?  Thanks Suz
SSHarkey
Posted: Sunday, December 8, 2019 10:27 AM
Joined: 3/15/2018
Posts: 586


SuzD, Like any med it works for some and not for others. For us, it’s given us an extra year of lucidity.
Lorita
Posted: Sunday, December 8, 2019 10:32 AM
Joined: 12/18/2011
Posts: 11893


If your husband or wife insists on doing the laundry and is using a lot, way too much, detergent, try the washer balls.  They stay in the washer and you never have to use any of detergent.  I've used them for years and they work!

 I like the idea of paper plates (I'm doing that myself now).  Anything to cut down on everything that has to be done.


Ed1937
Posted: Sunday, December 8, 2019 11:05 AM
Joined: 4/2/2018
Posts: 3078


SuzD wrote:
Good morning Crushed,  I’m not familiar with a Scam around Namenda, my DH is on this med.  Would you give me some information on this?  Thanks Suz

SuzD, welcome to the forum. Sorry you need to be here, but you will find it is a good place for help and understanding.

I will answer your question in case Crush does not see it. Don't take this as gospel truth because I could be wrong, but I *think* Namenda is a mix of two inexpensive meds, and sold at a much higher cost. Maybe someone else will verify if I am correct or not.

 



JoseyWales
Posted: Sunday, December 8, 2019 1:18 PM
Joined: 5/22/2016
Posts: 268


By far the biggest cost to us is the loss of DH's income. He quit working when he was 52. He had finally worked his way up to a company car and finally a nice income. Poof. Gone.

There's also the extra expense of eating out - DH is obsessed with eating out. He has to go to a restaurant where someone waits on us - no ordering at the counter. And if the restaurant serves alcohol, he feels he has to have a drink. Even if he doesn't finish it.

Then there's how thirsty he gets when we go out anywhere. I can bring along drinks, but he always has to buy one at the store. That adds up. He usually takes only a few sips out of whatever he buys, so it's not real thirst.

I guess this topic hit a sore spot for me!


Lills
Posted: Sunday, December 8, 2019 2:01 PM
Joined: 12/27/2017
Posts: 306


Yes, I notice the added costs too, especially the cost of (Abena) incontinence pull-ups! Sadly,  DH still wets through them sometimes at night which means another 5+ loads of laundry.
LadyTexan
Posted: Sunday, December 8, 2019 3:16 PM
Joined: 12/21/2018
Posts: 601


Oh my. I feel so unprepared financially for what is to come. I have met with the CELA and implemented nearly everything he recommended. I suspect we will not get through this disease without assistance from a government program such as medicaid.

I am still working but will be retiring in May. My pension is much much less than my current salary, but I am very grateful to have it. 

One of the significant expenses we had were DH's car accidents. DH had 5 significant accidents within 13 months. I call them significant because they required body shop work and insurance claims. Two required trips to the Emergency Room. In each case, DH hit a stationary object. Fortunately, no one else was involved. More fortunately, the last accident in June 2018 was the catalyst that led us to the testing and specialists that resulted in the Alz diagnosis. Although we were insured, we had high deductibles. As you can imagine, our auto insurance premiums are quite high even though DH is an excluded driver.

I try not to fret about finances. We live simply, but I am frightened about our financial future.


Jeff86
Posted: Sunday, December 8, 2019 3:18 PM
Joined: 10/24/2019
Posts: 255


Ed,

Perhaps you’re thinking of Namzaric, which is a combination of Namenda (generic is memantine) and Aricept (donepezil).  

Jeff


Crushed
Posted: Monday, December 9, 2019 2:41 AM
Joined: 2/2/2014
Posts: 5790


In fairness I should probably call it the NAMZARIC scam but it all stared with NAMENDA.

" Namzaric: Namenda was an Alzheimer's drug that was marketed by Forest Pharmaceuticals, which Actavis bought in 2014. That year, with the patent near expiration, Forest discontinued the drug. It replaced Namenda with Namenda XR, an extended-release version with a patent that won't expire until 2025. Namzaric? It combines the now-generic ingredient in Namenda with a second commonly prescribed generic ingredient. In effect, Namzaric is a branded drug that contains two generic drugs. Its 2018 cost will be around $450.

  https://www.bloomberg.com/opinion/articles/2018-01-09/how-allergan-continues-to-make-drug-prices-insane

If your LO is taking NAMENDA XR or NAMZARIC you are making a grifting drug company very rich

https://www.fiercepharma.com/special-report/namenda-xr

 


Ed1937
Posted: Monday, December 9, 2019 10:01 AM
Joined: 4/2/2018
Posts: 3078


Jeff86 wrote:

Ed,

Perhaps you’re thinking of Namzaric, which is a combination of Namenda (generic is memantine) and Aricept (donepezil).  

Jeff

Thanks Jeff. It's hard to remember everything I read. That's why I indicated that I *think* it was a mix. But Crushed answered the question, so all's good.



dayn2nite2
Posted: Monday, December 9, 2019 11:10 AM
Joined: 6/20/2016
Posts: 2354


Lills wrote:
Yes, I notice the added costs too, especially the cost of (Abena) incontinence pull-ups! Sadly,  DH still wets through them sometimes at night which means another 5+ loads of laundry.
Yep, hundreds of dollars spent on incontinence and cleaning products, mattress pads, wipes.  Also breakage of appliances and other household items.

Michael Ellenbogen
Posted: Monday, December 9, 2019 12:25 PM
Joined: 11/30/2011
Posts: 3363


Some things you did not think off for those who have early onset.

 

Get car impounded,

Parking tickets

Paying much more for eating out or giving more on tips because you can not count.

The other day at had a 4th beer not knowing the size of the beer glass, It was not till I got hope that my wife pointed out to me that the glasses were21 oz. I have no idea how I drank that and I thought the glasses were small.

Pay more money on missed taxes because you can find them.

Pay a lot more for gas because you can not remember the price to compare.

Pay a lot more for most items because you can not compare pricing.

Driving a lot longer because you don’t know how to figure out the most direct way.

Pay extra money for public transportation because you have trouble using ma chines or you and up going the opposite way and need to come back.

I use to do everting around the house. Now we need to pay someone for crapper work.

When I managed the bills we save money on all things because I always looked for the best deals or switch to others for better cost. Wife just pays the bill no matter what.

While you already said spilling things but I spill gasoline which not only waste it but if it falls on the grass I kill it.

I placed down the wrong fertilizers at the wrong time and wrong type.

Leave the water on and flood the house when it over flows the sink.

There are so much more but you get the idea. Its never ending.

 


Michael Ellenbogen
Posted: Monday, December 9, 2019 12:32 PM
Joined: 11/30/2011
Posts: 3363


While I don’t know for sure but I am willing to bet this house will cost me about 50,000 more just because I am unable of figuring things out any more and need to rely on others. 


ButterflyWings
Posted: Monday, December 9, 2019 7:09 PM
Joined: 12/11/2018
Posts: 208


*sigh* Yes.
We have had to overspend on so many of the things already mentioned.

Also...

- So many late fees! re: overdue bills from missing or hidden mail. e.g. water was shut off last week. Our town was nice enough to get it restored in less than 1 hour, but it cost me a $50 late fee. 

- Fines. e.g. parking and red light tickets (from before diagnosis last Fall; I have disappeared the car at this point since DH thinks he is fine and can still drive)

- Paying full price ($370-$400/for 60 day supply) of a necessary med (life or death mandatory, no alternative)This is due to missed mail and funds diverted from bank account. Before I caught it, this caused cancelled insurance supplement and Rx 

- Missed airline flights (nonrefundable). We've missed 5 or 6 since diagnosis. Now we drive.

- Multiple purchases of the same things. Not hoarding per se, more that he didn't recall he already had a bag, suitcase, jacket, planner, etc. etc. And then we've replaced many things lost, left on the bus, in an uber, etc. Lots.

- Overpaying on a lease for office rent 1+ years. I was not eligible to break the contract despite POA. And he refused. Though space went unused, month after month. grrr.

- The worst though, is what I guess is "lost money" that we would have received when the inevitable end of life occurs. My poor LO mismanaged funds and that is bad enough though not his fault of course with AD. But, life ins was cancelled for lack of payment before I realized he was ill, and now they will not renew of course, given the diagnosis. So, we will no longer receive $200k death benefit from policy that he paid into for 9 years...its like $200k, just gone. So...when this ugly disease takes him, we won't even have those funds he had intended to provide for our survival and post AD caregiving recovery. I was really heartsick about this for a while and then very recently, I just let it go. Whatever. 

That much needed insurance policy, like so many other losses from this nightmare we are living in, is out of my control. So I am learning not to dwell on the sad, painful, infuriating, frustrating stuff when I can redirect my thoughts. Just like redirecting my PWD. It hurts yes, but I can't afford to be despondent. (It is only money lol - laughing to keep from crying).

 


LadyTexan
Posted: Monday, December 9, 2019 8:09 PM
Joined: 12/21/2018
Posts: 601


I thought it was just us. I am so sorry that this is a common dilemma. 

I was getting very fretful and anxious about the unnecessary expenses in an already financially dire situation. As usual, you all have helped me settle down. 

I know I will reflect on these as the good old days. I know I cannot control some of these events. I know DH and I are doing our best. I know it is only money. I know that today, we have enough. I am a person of faith. I believe the Lord will provide....but we still have to do our part to the best of our abilities....hence meeting with a certified elder law attorney. I can't emphasize that enough.

I did have a recent "win". DH had 3 credit cards. I have been very reluctant to confiscate them for fear of another angry explosive tantrum. Last night I kindly asked him to cancel one of the cards because it had an annual fee. He calmly agreed. We got on the phone together and cancelled the card. It was sad to see him give up one more thing, but I believe its for the best.


Ed1937
Posted: Monday, December 9, 2019 8:36 PM
Joined: 4/2/2018
Posts: 3078


These aren't "less obvious costs", they're disasters! I'm so sorry.
Boxerlover53
Posted: Monday, December 9, 2019 10:41 PM
Joined: 11/29/2019
Posts: 115


SuzD Like you I’m not aware of any Namenda scams. My DH is on Medicare with supplemental part D insurance and we pay $15. for a 90 day supply. He’s been on it since March 2019. Hard to tell if it’s working but he hasn’t had any side effects either so the neurologist wants to keep him on it. I’ve heard from others that it’s only effective for awhile.
Paul&Me
Posted: Tuesday, December 10, 2019 9:36 AM
Joined: 1/21/2017
Posts: 273


Shoes and socks. He does a 180 often on these. We buy packs of socks, but when he tries them on they are too tight. He probably has 40 pairs of socks in the drawers that he will sometimes wear, and now that it's colder he wears 2 pair at a time. We have donated or given away probably 40 more pairs. Yesterday, what did he tell me in Walmart? "I want to look at socks."

The shoes are perfect in the store, but once he gets home they hurt his feet. Any pair that he doesn't want anymore is described as being so old, he had them when he had the farm (that we sold in 2011.) I had a large box and put away all the shoes he said hurt his feet, but were practically new. One day I got them out again and some were okay after all, depending on the day of course.


Dreamer Lost
Posted: Tuesday, December 10, 2019 10:33 AM
Joined: 3/7/2019
Posts: 479


Well, just this morning, tried to start the car in the garage and the battery is dead!  Can only think DH left car door open (haven't driven it in 3 days) and it ran the battery down.  Now I get to figure out how to get it jumped while parked in the garage with not enough room for another car beside it.
Doityourselfer
Posted: Tuesday, December 10, 2019 10:55 AM
Joined: 9/5/2017
Posts: 629


Dreamer Lost, 

If you have AAA they'll come and jump your battery with a portable charger.

 


Ed1937
Posted: Tuesday, December 10, 2019 10:56 AM
Joined: 4/2/2018
Posts: 3078


Long jumper cables should do it, or a portable charger or unit for jumping. You might want to make sure there is no corrosion on the battery cables.
Rescue mom
Posted: Tuesday, December 10, 2019 11:13 AM
Joined: 10/12/2018
Posts: 1530


AAA may be another expense, but now that DH can’t help with cars, nor drive me to and fro garage, it’s been totally worth it—and paid for itself—to have them come to my house for some “basic” car problems, and towing if needed. They will jump a battery, and if you need/want, sell you a new one and put it in.
SuzD
Posted: Tuesday, December 10, 2019 1:38 PM
Joined: 3/26/2018
Posts: 95


Thanks all  for your responses regarding Namenda.  

Boxer lover,  my DH has been on Namenda XR for about 2 years,  I’m no longer positive it’s making a difference, but will stay the course for now.

  I did experience a significant challenge around this prescription with Medicare at the beginning of 2019. 

Last year I paid $20 per month , in January it jumped , out of the blue,  to $100 per month (yes, same generic prescription).   several hours on phone with our Advantage plan provider, I learned that Medicare can arbitrarily change drugs to a different “tier” which impacts reimbursement.  I did manage tp obtain a 2 year exception on this prescription, so back to the $20 per month. Whew

How many folks don’t spend the time to fight this and pay way to much for already expensive prescriptions.

Suz


Ed1937
Posted: Tuesday, December 10, 2019 4:54 PM
Joined: 4/2/2018
Posts: 3078


SuzD wrote:

I learned that Medicare can arbitrarily change drugs to a different “tier” which impacts reimbursement. 

Suz, would you mind telling us which Medicare Advantage plan you have? It seems that if they changed the tier so they would pay less, it would also affect all Medicare users. The reason I ask is that we had an advantage plan several years ago, but had nothing but problems with them. At the end of the year, we switched back to Medicare original. Some of the advantage plans look pretty good, but I'm reluctant to try them after the experience we had with Humana.



SuzD
Posted: Tuesday, December 10, 2019 6:49 PM
Joined: 3/26/2018
Posts: 95


Ed,  Dh has been under a Blue Cross advantage plan for year

  My understanding of the Medicare drug tiers is that is specific to Medicare, and all drugs are rated on the tiers. Tiers are1 to 4 ,  Tier 1 being those they pay the most towards.  Namenda was a tier 2 drug then went to a tier 4 without any reason.. hence the increase.

  I was able to get the lower price after our Dr sent a request to Medicare.  I truly don’t understand the how or why, just happy I was able to dig into it,, how many folks don’t have a advocate to help them negotiate this craziness. 

Suz


Ed1937
Posted: Tuesday, December 10, 2019 7:06 PM
Joined: 4/2/2018
Posts: 3078


Thanks, Suz.
Molokai16
Posted: Tuesday, December 10, 2019 11:40 PM
Joined: 10/23/2018
Posts: 106


My spouse no longer works. Four hospitalizations and two car wrecks. Totalled his last car so, thankfully, he no longer drives. I hid all keys to my car. He is currently in MC. But he was so disruptive at a Hanukkah party they were having, they drove him home to me, just when I was taking a deep breath that my worries were over. Stupid, sad me. I had to start totally from scratch with my own car insurance. Because we are married, caused an even bigger hassle to get reasonable car insurance for myself. Had to jump through many hoops to get this accomplished. But got it done. Tomorrow, going back to MC, where I hope and pray he will stay. $14,000 for MC start up fees and he's only spent five nights there. Another $4600 due Jan. 1. But, frankly, it's worth it if he stays this time around. Have no help from relatives. Can always sell house.
Dreamer Lost
Posted: Thursday, December 12, 2019 6:58 PM
Joined: 3/7/2019
Posts: 479


Doityourselfer, Ed and RescueMom - thx for the car tips.  I will have to look into AAA but for now I ordered a portable charger off Amazon for $40 and jumped it myself.  I now know how to open the car lid, found the negative charge on my BMW (which is nothing but what looks like a screw with a wire attached).  The battery must be hidden? And how to turn the I-drive back on.  When I got the car started it seems the i-Drive shut off and the car wouldn't go above 5 miles an hour!  I drove around the neighborhood (very slowly with  DH) trying to figure what was wrong.  Put it back in the garage and shut it off when a message came up about turning the i-drive back on by turning the radio on/off (who would of thought).   Proud of myself for learning/doing so many things around the house but sad also, that I have to.