Alzheimer's Disease Caregiver

Medicare Health Plans

Uggg…. trying to understand Medicare health plans is not something I enjoy.  I know when they’re set up right, they can be great.  Thanks to Medicare, Mom has to pay very little for her Alzheimer’s disease treatment and doctor visits.

For many, health insurance for seniors is primarily Medicare.  Mom had all of her’s set up when she first retired, so I didn’t have to deal with all the ins and outs.  I do know that she qualified for parts A and B, and she has always had a Medicare Advantage plan that helped to keep her out-of-pocket costs for doctor visits low.  I did help her find a Medicare Part D plan that covered her prescriptions and Exelon treatment for Alzheimer’s disease.

Last year, we received a notice that the company with Mom’s Medicare Part D plan would no longer be offering it.  I found another company to switch to with no problems.  I logged into Medicare’s website and used their online tool to compare Medicare plans, and helped Mom enroll in the best one.

I thought she was all set for 2010, until she received a bill for a doctor’s visit in January.  All of her doctor visits and medical care bills had been going through her Medicare Advantage plan with Advantra Freedom.  I was surprised to see her bill had been submitted, but Advantra did not cover anything.

I called Advantra and learned they were no longer offering Advantage Medicare health plans.  Mom’s coverage had ended on December 31!  They said they sent notices and offers to enroll in replacement Medicare health plans, but I didn’t see of them.

So, I spent the next couple of hours on the phone with other companies that offer Advantage Medicare health plans to find one.  We found one with the same coverage and no monthly premiums, and enrolled over the phone.

Now that I’m working at home, I will be able to be more involved in Mom’s business.  I’ve also convinced her to let me keep her bills and important papers in a file box I have instead of her taking everything to her room (and losing it).

In Home Caregivers

I recently began to realize that all of us in our family are becoming Alzheimer’s caregivers.  My husband is always willing to talk to Mom and patiently answering her questions, I provide all of her transportation and handle her personal business, and the kids help by keeping her company and providing companionship care.

Even with everyone helping out, I knew Mom needed more.  With my husband and I at work all day and the kids at school, her days were long and lonely.  I tried to encourage her to call her sisters and invite them over, but she never would.  She also was not taking all of her medicine.  Even though I would set it out in the mornings, I found out she was taking the medicine to her room and forgetting to take it.  She wasn’t eating lunch, and she was trying to keep the fire in our wood stove  going (even after I asked her to leave it alone).   A few weeks ago, someone called and left an automated message for my husband.  Mom was convinced it was her bank calling to tell her someone was stealing from her.  She worried about this all day until we came home.

So, what is one to do?  In home caregivers are expensive, and I knew Mom would have trust issues.  Even if I could find someone who specialized in providing care for the elderly, would it be difficult to find people who were Alzheimer’s caregivers and understood how to deal with dementia?  Something had to be done.

For us, we decided to make some changes so I could be home.  My job was becoming more and more demanding, and the long hours and long commute were taking their toll.  So, I left my job to pursue a career in freelance writing.  I enjoy writing, and I’ve been writing articles for online sites on the side for extra money.  Once I get my speed up, I should come close to replacing my income.  I think it will work out well, because I can fit writing around my schedule.  Also, my office is the loft above the kitchen, and I’m always within earshot if Mom needs anything.

I know I still have a lot to learn about elderly caregiving, and I may reach a point where I’ll need help.  I should have more time to find other Alzheimer’s caregivers for support and information.

Since Mom was diagnosed, I have learned there are some treatments for Alzheimer’s disease.  Unfortunately treatments do not cure or revert brain damage, but a few medications do slow down the progression of Alzheimer’s disease symptoms.

The two medications that we are familiar with are Aricept and Exelon.  Both are most effective early in the illness when Alzheimer’s disease symptoms first appear.  Mom started out with Aricept, but her system couldn’t tolerate it.  She has had better success with the Exelon patch.

For Mom, her Alzheimer’s disease treatment includes the medication and visits twice a year to her neurologist.  The neurologist visits seem more like monitoring than treatment.  This past week Mom had an appointment. The doctor seems like a very nice person, and his specialty is Alzheimer’s and dementia. His office is about an hour away in Indianapolis, so the visits are usually a day long adventure for Mom and I.

A few days before the appointment, I started reminding Mom about it. She always dreads going, but once we’re out she usually enjoys herself. I made sure to explain to Mom that this appointment was a little earlier than usual (11:00 a.m.), and we would need to leave by 9:30 to allow time for traffic and parking.

Mom was up early the day of her appointment, and I checked on her progress a few times as she was getting ready. When I would observe her start to get distracted and piddle around, I would gently remind her that she needed to get ready. In spite of my best efforts, she did get behind and was not ready to leave at 9:30. I was frustrated with her and she became defensive as I tried to get her to hurry so we could leave. We left about 15 minutes later than I wanted to, but we made good time on the road and we both managed to relax a little. It was a beautiful, sunny day, and Mom was happy to be out.

The visit was very routine. First, they took Mom by herself to give her a depression screen and a memory test. After that was over, her and I both went to talk to the doctor. The doctor said he was a little concerned because her depression screen showed she may be more depressed. I mentioned to him that Mom rarely wants to go anywhere and usually spends her day in her pajamas and robe. He decided to try taking her off of the Zoloft and putting her on different antidepressant, Effexor.

The doctor was pleased with Mom’s memory. He said she had actually improved a couple of points over past memory tests. Mom was very happy with this news and beamed with pride. I asked if it was common for an to see improvement on memory tests. He said it happens sometimes, especially when the patient is undergoing medical treatment for Alzheimer’s disease. He said for Mom to continue using the Exelon patch each day since she is having a lot of success with it.

On the way home we stopped at Cracker Barrel and had a nice lunch. As we drove home afterward, Mom talked about her car. She said she really hated that it was just sitting there, and that she’d really like to get it fixed up so she could drive. I told Mom that if we fixed it up we could keep it for an extra car, but she really didn’t need to drive. “Why, do you think I’m not qualified?” she said indignantly. “Mom,” I gently explained, “with your Alzheimer’s you don’t need to be driving.” “Well, I don’t think I even have Alzheimer’s,” she snapped. I tried reasoning with her for a little bit, but when that didn’t work I just changed the subject.

It was sad because I think the doctor’s comments boosted her up a bit, but the discussion about her driving brought her back down. Also, this made we realize how strange this disease is. Her memory is doing well, but at times she seems more confused and disoriented.

It’s been a while since I’ve posted. Nothing has changed with Mom’s car, no lien release and no duplicate title so we can sell the car. Even though it’s obvious to us that dementia patients should not drive, Mom doesn’t see it that way.

Mom has a hard time comprehending what is going on with the whole car lien issue. I’ve tried to explain it to her, and she keeps going through all of her papers trying to find documents for her car.

The people who were going to buy Mom’s car ended up buying something else. Now, Mom wavers on whether or not she should sell the car. I think she has accepted the fact that she should not drive, but she believes her car is worth a lot and hates the thought of selling it for only $2,000…

I’ve called the bank a few times to see if they’ve found anything, but so far they have nothing. Hopefully they will find it soon, and we can come to an agreement on what is best. Maybe it would just be easier for her to give us the keys and we can keep it around for an extra car…

For everyone’s safety, Alzheimer’s patients with dementia should not drive.  It’s just not easy to take away something that Mom loves…

paperwork by kozumel (Flickr)

Mom’s car continued to sit in disrepair while my husband and I tried to figure out what to do.  Since she is a dementia patient with Alzheimer’s disease, we did not want to fix it and have it available to tempt Mom into driving.

We came up with two options.  We could tell Mom we would have it fixed if she would give us the keys.  We would drive her car to take her places she needed to go.  The only problem would be that I didn’t think Mom would willingly give up her keys.  Also, I was afraid that seeing her car parked outside would depress her.

The other idea was to convince Mom to sell the car.  The car’s value would only continue to depreciate, so it would be best to sell now and she could put some extra money in the bank.  I just wasn’t sure if I could convince Mom to sell her car.

It just so happened that while we were considering our options, two different people asked us about Mom’s car within a week’s time period.  An 11-year-old car with only 34,000 miles and one owner is a good find!  We told Mom that some people were asking about it, and to my surprise she seemed interested in the idea of selling it!  We looked up the value, and Mom agreed we could try to sell it for her.

Great!  Mom was ready to sell, we had a buyer and an agreed upon price.  The problem?  Mom had no idea where her title was.  I remembered that at the time, Mom had enough money to buy it direct from the dealer without having to have it financed.  Since it had been 11 years ago and she had moved twice, I was sure she wouldn’t be able to find it.

Last Saturday morning, we were going to the license branch to apply for a duplicate title.  I had called the BMV, and they said she just needed to come in with a photo ID and an old registration to help identify the vehicle.  We knew where her last registration renewal was, so I thought we were all set.

Mom was in her room getting ready, and I knocked on her door to see if she was about ready to go.  I told her that all she needs is the registration paper and her driver’s license.  “Driver’s license?” she asked.  She looked in her purse and it wasn’t there.  I’m not sure why, but Mom stopped using a wallet some time ago.  She usually keeps her license and debit card in a plastic zippered bag inside her purse.  Apparently, she had taken the bag out of her purse and moved it to a “safer” place.

We only had about an hour and a half before the license branch was ready to close.  I tried to help her find her license.  We checked all of her usual places she keeps important things.  It was really sad, like many dementia patients, Mom has some clutter hoarding tendencies.  Her room looks neat at first glance, but nearly every drawer, shelf, and box sitting around is stuffed with random papers and useless stuff.  Even her file cabinet that still has some folders was not organized in any kind of logical fashion.  After looking for awhile, we ran out of time to find it and go to the license branch that day.

Later, Mom finally found her license.  It was inside one of the containers she saved to put important things inside.  I took the day off on Tuesday so we could go and not be rushed.  We got to the license branch and the lady pulled up Mom’s VIN number.  She informed us that a bank  had a car lien on Mom’s car!  I explained that I believed Mom had purchased the car directly from the dealership.  She shrugged her shoulders and gave me a slip of paper with the bank’s name and address.  She said the bank would have to send a lien release before they could issue a duplicate title.  She also gave me their fax number so the bank could fax it directly to the license branch.

We went to the car so I could get on the internet to find the bank’s phone number (thank goodness for my iphone!).  I had never heard of this bank, but I was able to find an Indianapolis phone number for it.  When I called, the lady answered with a different bank name.  I told her I was looking for a different bank and asked if they had ever gone by that name.  She said they had, but it had been a long time ago.  I explained that we needed a lien release, and she gave me the number for the bank’s call center.

After waiting on hold awhile, I finally got a live person to help us.  Before she could talk to me, she had to get verbal permission from Mom.  She looked up Mom’s social security number in their system and found nothing.  She said it was so old it wasn’t in their computer system.  She said she would have to submit a request to their research department to go through old archives to try to find it.  She said it could take up to two weeks.

I realized we wouldn’t be able to resolve this in one day, so we went home.  I tried calling the car dealership to see if they had any records from when Mom bought the car.  Of course, the dealership had changed owners and they did not have records from that long ago either.

I’m hoping the bank will find something soon so we can take care of all this.  Mom keeps looking through her papers to see if she can anything from when she bought the car.  Maybe it was financed initially, and she paid it off quickly?  I’m really not sure.  I just know her car will continue to sit out there until we figure this out.  Hopefully we will figure it out before Mom changes her mind about selling it…

I think everyone with a dementia patient in the family has had to deal with the car issue.  When a person gets to the point they should not be driving, it may be obvious to others, but not them.

In Mom’s situation her Alzheimer’s and dementia have been gradual.  When she moved in with us, her car came with her.  It was a 1998 Plymouth Neon, and Mom had always been very proud of it.  She started out doing some driving, but she had a lot of trouble navigating the country roads where we live.

Mom got to the point where she didn’t WANT to drive, so I wasn’t too worried.  We were always available to take her where she needed to go.  The only time she would drive was to go to the end of our driveway to meet the kids when the school bus dropped them off (our driveway is almost a quarter of a mile).  I thought it was harmless, and that it would help her keep a schedule and feel needed.

One time I needed to go out of town for a few days for work.  I asked Mom to drive the kids to the end of the drive in the mornings like I usually do.  One morning they got out there too late and missed the bus.  Mom tried to drive down the road to catch up to it.  She was going way faster that she normally would, and she almost lost control on the loose gravel.  The car was fishtailing and son (who was 11 at the time) had to tell her to put  on her brakes.

After that episode we strongly discouraged her from driving, and she acted like she wouldn’t.  Every now and then she would talk about driving, but I would gently remind her of the problems she had before.  She continued to drive down the drive to meet the kids for awhile, but on many days she got her time confused and missed them.  The kids told me when she did meet them, she had trouble turning around and acted very nervous.  At that point we told Mom the kids would just walk down the drive themselves (a little exercise and fresh air is good for them, anyway).

Mom kept her keys and would occasionally go out to clean off the car, but she didn’t try to drive.  I mentioned this situation in an Alzheimer’s support group meeting, and some of the group members strongly urged me to take the keys.  They had had experiences where Alzheimer’s patients they didn’t think would try to drive did try.  I knew Mom would not give up her keys without a fight, so I tried to find a different way to keep her from trying to drive.

It soon came time for her to renew her registration.  She misplaced the form that was sent in the mail, so that gave me an excuse to put off renewing it.  When she finally did find it, I had a heart-to-heart discussion with her about her driving.  I told her it had been several months since she had driven on the roads, and it would be a waste of her money to renew the registration.  She insisted that she might want to try to drive again once she was more familiar with the roads.  I continued to put off going to the license branch because I knew she would not try to drive with expired plates.

Then, came the day she decided to drive to the mail box.  I was at work, but the kids were home.  She asked my son to get in the car with her to go down the drive.  She drove down, mailed the letter and came back.  Then, about an hour later, she had Tyler get in the car again to go see if the mail came (she has a fear of people stealing her mail from our mailbox).  Both times she went down the drive, the car was not acting right.  Tyler was very uncomfortable because she was agitated about the car and because she had missed the mailman.

When we came home and learned about the incident, my husband and I went to check out her car.  It turns out that it had been sitting so long the emergency brake had locked on one of the back tires.  She had gone down the drive and back two times while dragging one of the tires!  A chunk of tread was missing and wires were visible on the tire.  This made me realize that it was very unsafe to leave her with the keys, and that as a dementia patient she has really lost a lot of judgment and problem-solving skills.  We were fortunate that she didn’t try to go somewhere (especially with our son) and blow out the tire and have a wreck.

Mom asked us to have her car fixed.  We put off the repairs while we figured out how to handle this situation…

When Alzheimer’s disease strikes, it causes a slow, progressive decline.  While Mom has her good days and bad days, it is not always easy for us to notice the gradual changes.  It’s hard to believe that she has been living with us for almost two years.  Recently, I’ve been thinking about some of the ways Alzheimer’s has changed Mom since she moved in with us.

Mood

I think Mom’s mood has improved a lot.  Part of this may be due to the fact that I had to become more involved with her medications to make sure she was taking them properly.  She was prescribed Zoloft to help with depression, and it really makes a difference.  She’s not as irritable and angry as she used to be.  I also have to remember that she had been living by herself for many years. It was quite an adjustment for all of us when she became part of our busy household.

Self-Sufficiency

When Mom first moved in with us, she had not been diagnosed with Alzheimer’s.  She started out doing a lot of things on her own, like driving and handling all of her financial matters. When we saw that she was really having trouble, we had to step in.  This was difficult for Mom because she had become very independent.  She resisted our help and seemed annoyed that we thought she needed it.  Now, she seems to accept the fact that she does need our help.  In a way, it’s sad – like her spirit has been broken.  But for her safety, it’s for the best.

Socializing

Mom socializes much less than she did before.  We invite her to go with us to church, shopping, and the kids’ activities.  At first, she went quite a bit, but now she goes much less.  She always has an excuse like she tired, she’s has too much to do, or she didn’t have time to fix her hair.  If the kids have friends over, she will stay in her room for most of the time while they are there.  Even when my sister and her family came from out of state to visit, Mom spent a lot of time in her room.  She has two sisters that live nearby.  I always offer to take Mom to go see them, but she just doesn’t want to.  I imagine it has to be stressful and uncomfortable to try to socialize and act appropriately when you have dementia.

Confusion

We have really noticed that Mom seems to have more frequent bouts of confusion.  Some days it seems like a fog has settled over her mind and she struggles to figure everything out.  She’ll seem really disoriented with time and what’s going on.  She will ask the same questions over and over, then stare back with a puzzled look when we answer her.  Occassionally, she will see or hear something that isn’t there.

Memory

Mom’s memory has declined some, but not too much.  She’s been using the Exelon patch to help with the symptoms of Alzheimer’s, and I think it has helped.  Her memory problems are mostly with short-term, but I’ve notice that she doesn’t recall places and events very well.  Sometimes when she remembers, her mind seems to piece the wrong parts together.  We have learned to use some memory aids to help Mom out.

The Future

Living with Mom’s Alzheimer’s disease, we have to take it day by day.  Things are going okay now, but I know we need to plan for the future.  I know that Mom will need more direct care and assistance as her illness progresses.

With Mom’s Alzheimer’s, she definitely has her good days and bad days.  It’s so strange how sometimes the dementia is very obvious, and other days she seems like nothing is wrong with her.

A lot of people that are not around Mom very often comment on how well she is doing.  They may even say that it doesn’t seem like anything is wrong with her.  Sometimes I even catch myself wondering if she really is okay.  She may have several consecutive goods days where she seems to remember better and act normal.

Unfortunately, the stretch of good days do not last very long.  When her bad days come we are reminded how cruel this disease really is.  Sometimes it seems like a fog of confusion has settled over her.  We have to patiently explain to her what day of the week it is and what’s going on around her.  Other times she may seem sharp and lucid, but her understanding of things are way off.  She knows that she heard me calling her name, but I was upstairs asleep, or she knows my son told her a whole bunch of kids were coming over, but he really said only a couple of kids.

Last night, we really felt sorry for Mom.  I saw her trying to plug in a rechargeable flashlight.  When I asked her what she was doing, she said she was trying to get the flashlight to work.  She told me that all the bulbs had burned out of her other flashlights, so she found this one and wanted to see if it would work.  She said she didn’t know if the bulb was burned out on this one, too.  I gently tried to explain to Mom that with flashlights you have to replace the batteries, not the bulb.  I have had this same conversation with her numerous times, but she never remembers.  We have given Mom several perfectly good flashlights, but she always takes them apart and they won’t work anymore.  Her room has become a graveyard for several flashlights.  Dismembered pieces and parts are hidden in boxes and drawers for her to find and try to put together again later.  I think Mom likes the idea of having a flashlight nearby at night to give her a sense of security.

My husband overheard our conversation about the flashlights.  He came over and helped plug in the rechargeable flashlight for Mom.   She knealt down on her knees, and watched intently as he plugged it in and pointed out the indicator light showing it was charging.  Her eyes were wide as she watched closely, and she seemed almost like a little kid seeing something for the first time.  My husband also stressed that she should not take out the bulb.  “Oh, but I can,” she told him proudly.  He told her he knew she could, but she would break the flashlight if she took out the bulb.  I told Mom she could use one of our flashlights until hers was working, but to please not take out the bulb.

Mom was happy.  She was able to go to bed with the security of having a working flashlight near her bed.  My husband and I went to bed feeling sad.  Times like this leave no doubt, Mom really does have Alzheimer’s disease.

A few weeks ago, my sister and her family came all the way from Arizona to Indiana for a visit.  This was the first time the whole family had been back since they moved five years ago, long before Mom was diagnosed with Alzheimer’s. We were very happy they were coming, but I wondered how Mom would handle a whole week of company with her dementia.

My sister has three wonderful kids: two girls, ages 9 and 13, and a boy who is 15. The last time Mom saw them was about three years ago when she went with me to visit.  Mom was very welcoming and happy to see them.  She did seem to struggle with keeping their names straight, but otherwise she did fine.

While they were here, the whole family was in and out quite a bit visiting other family and friends.  When they were at our house, Mom spent a lot of time alone in her room.  I really expected that she would want to visit with them as much as possible, but maybe it was too much for her.

A few times, Mom would become annoyed if someone didn’t put up a dirty plate or pick something up.  She would always assume it was one of my kids and say something about it.  I bit my tongue because I would have hated for Mom to become upset with my nieces or nephew and say something hurtful to them.  My kids have grown accustomed to her occasional outbursts, and they’ve learned to not take it personally.

At the end of their visit, my sister said that she thought Mom seemed happy and content.  I chuckled to myself because I know that she is often angry and agitated.  Mom has enough awareness to put up a good front to others, then let her true feelings show when she’s comfortable.

We did talk about the possibility of sending Mom out to visit them sometime.  Right now, we cannot all afford to go, so Mom would have to go by herself if possible.  I think it would work if the airline could provide special assistance since she has Alzheimer’s, and if we put her on a direct flight so she wouldn’t have to worry about changing planes.  Mom wants to go, but she isn’t too sure about going alone.  I’ll have to look into this more and see what options are available.  Arizona would sure be a nice escape for Mom from the cold midwest winter.  Not to mention, it would be a nice break for us.

Sometimes it’s not always obvious if an elderly person needs help.  Of course they need help if they fall down or drop something.  But dementia and Alzheimer’s are not always apparent.  It can be difficult to tell from a distance if someone is lost or confused.

When you see a young child wandering around without an adult nearby, we instinctively know to help them.  If you see a senior citizen walking alone, you cannot tell at a glance if they are still sharp as a tack or if they are disoriented.  One morning, a man that I work with was on his way to work when he saw an elderly woman standing on the side of the road.  It was pouring down rain, and she was in her nightgown.  There was no doubt that she needed some help. Today, I had two instances where I wondered if an elderly person needed help.

First I was going into Wal-Mart on my lunch hour to shop.  I noticed a little old lady standing alone outside the entrance of the store.  She was standing there, just staring straight ahead.  I wondered if she needed help, or if she was just waiting for someone to drive the car around to pick her up.  As I got closer, I could tell she was alert.  She looked at me as I walked closer, and she was also peering out into the parking lot.  I figured she was okay, and I thought that I might even frighten or offend her if I asked if she needed help.  I went into the store without stopping to see if she was okay.

Then, on my way home from work tonight, I saw an elderly man sitting on a guardrail on the side of the road.  This was along a rural stretch of a four-lane highway.  At first, I thought he was a hitchhiker stopping to take a break.  When I drove past him, I slowed down and got a good look at him.  He was very thin and looked to be in his late 70’s to early 80’s.  He was sitting on the guardrail staring straight ahead with no expression.  It was 80 degrees out, and he was wearing a long-sleeved dress shirt.

I felt very concerned, yet I was hesitate to stop.  What if he wasn’t as old as he looked and he was a hitchhiker?  What if he was drunk?  What if he did suffer from dementia and became combative, or ran away from me if I approached him?   I still felt very worried and wanted to do something, so I called 911.

911, what’s your emergency?

I’d like to report that there is an elderly man sitting on a guardrail on highway 40.

Okay…  exactly where on 40?

I gave the dispatcher details on the man’s location.  I tried to explain that he didn’t look like a hitchhiker or someone out for a walk, and that I was worried he might have wandered off.  The dispatcher then started to ask detailed questions about his appearance.

Is this a white gentleman?

Yes.

About how old did he look?

I’d say in his late 70’s to early 80’s.

What was he wearing?

A tan shirt and pants.

What was his hair color, or was he bald?

I believe he had gray hair.

Okay, we’ll send someone to check on him.

I was relieved that the dispatcher took my concerns seriously and sent someone out.  I couldn’t tell if the dispatcher was trying to match up my description with someone who was missing, or if he had received other calls and was making sure it was the same person.  I hope the man was okay.  It’s a sad fact that many elderly people with dementia do wander off.  I think if your gut tells you someone may need help, you should take the time to check.