Caregiving Daughter

In the past few years, Mom has not done a lot of activities.  Due to the dementia she has from Alzheimer’s, she has kept more to herself.  Instead of pursuing hobbies, Mom spends a lot of time going through her things, over and over.

There still are a few things that Mom does that I think are positive and good for her.  One thing is that she likes to read.  She will read our local newspaper from cover to cover.  She also enjoys some magazines like Reader’s Digest and the weekly newsletter from the church she used to attend.   Sometimes, she even gets out the phone book and spend hours pouring through the names looking for people she knows.

Another positive activity for Mom is spending time with the cats.  I really believe that pets are great for Alzheimer’s patients.  Mom loves spending time with them and helping out with their care.   They really bring a lot of enjoyment to her life.

Mom also likes to work outside.  She’s afraid to go out unless we are home, because she’s so suspicious of someone lurking in the bushes watching her.  When Mom does go out, she works by picking up sticks and sweeping off the porch and deck.  Lately, Mom has even been joining us when we go out to pick the wild raspberries.

Going to Church is another favorite activity of Mom’s.  Sometimes it’s a challenge to get her up and moving early enough so she’ll be ready, but when we make it she is really happy.  It gives her a reason to get dressed up and be around other people.  Mom loves the singing, and she sings a lot of the old hymns she’s familiar with around the house.

I really glad that in spite of suffering from Alzheimer’s, Mom still has some activites she enjoys that she can participate in.  We’ll do everything we can to ensure Mom will be able to participate in these activities as long as possible.

Last night was Angel’s big slumber party.  We have a large attic that is partially finished (it has lighting and plywood floors).  She wanted us to get it cleaned up and ready so she and all her friends could sleep up there.

This past week, we cleaned it out and laid down a large piece of carpet remnant.  We moved up some chairs and Angel’s T.V. with a DVD player.  It would be the perfect place that her and her friends could be silly and have fun without disturbing Mom.

Mom did alright with the party because she knew about it well in advance.  She was worried the entire time because she had lost her keys.  She said she had used them to lock up her file cabinet (she was afraid that one of the party guests might go through it).  After she locked her cabinet, she did not know what she did with them.  I was super busy finishing up with the party preparations, so I didn’t have the time to help her look.  I tried to assure her that they would show up, and if I were to run across them I would let her know.

During the party Mom kept mostly to herself.  The few times we was around the girls, she would ask what their names were.  After Angel opened her gifts and they all went upstairs, Mom asked me to name each girl who had been sitting around the table.  After I named them all, she asked if Emily was there.  (Emily is the girl that Mom does not like because she thinks she took Mom’s picture one time without asking her).  I told her that Emily wasn’t able to make it because she had to play in an out-of-town softball tourney.  Mom raised her eyebrows and went, “oh…” like there was another reason she didn’t come.  I left it alone and didn’t say anymore.  I’ve learned it’s easier to let Mom think what she wants to.

Today after all the girls got up and left, Mom finally found her keys.  They were lying under her bathrobe that was folded up in her airmoire.  She was relieved that she found them, and that no one had been able to go through her file cabinet.  I was relieved that Angel and her friends had a good time.

Alzheimer’s disease really does some strange things to Mom’s memory.  Some things are just totally gone.  Like what she ate for breakfast, or the simple question she already asked five minutes ago.  Other things are remembered, but they are twisted and distorted.  It’s like a mad movie producer cut out parts of the reel and filled them in with snippets that don’t belong or make sense.

A view months ago, I wrote about the issue we had when Mom mistakenly thought my daughter’s friend snapped her picture without Mom’s permission.  Her friend was holding up my daughter’s cell phone reading a text message, and Mom thought she was holding up the phone taking her picture.  Since they were laughing, Mom thought she took the picture and they were laughing about it.  Some of this paranoia and fear of people staring at her stems from issues she had in her childhood.

Since this incident, Mom has become fixated on this poor girl.  I’ll call her “Emily.”  Emily has been friends with my daughter Angel since kindergarten.  She’s a very nice girl, and I’ve always enjoyed having her over because she is so well behaved and respectful.   I hoped that after awhile the picture incident would blow over, and Mom would forget about it.  Unfortunately, she remembers it quite well.   Now, she even “remembers” new things about Emily that proves she is one bad girl…

About a month and a half ago, Mom went with me to watch Angel participate in a cheerleading performance.  Her group performed outdoors at our community’s Relay for Life event.  When it was over, we chatted for a few minutes with the other girls and their moms, then we left to go home.  Mom seemed like she had a good time and enjoyed being out.

A few weeks ago, Mom started asking questions about that day.  Who was the lady that I was talking to?  Was it Emily’s mom?  I told her that no, I was talking to someone else.  Emily and her Mom were not even there.  Mom shook her head.  No, she saw Emily, Emily WAS there.  Mom then proceeded to tell me what happened.  I was walking ahead of her and I was talking to a lady.  Mom saw Emily and another girl walking toward her.  Emily stared at her, then she held up her hand to whisper something to the other girl, and they started laughing at her.   I told Mom that I knew Emily was not there.  I said it must have been a different girl, and they were probably whispering and laughing about something else, not her.  As usual, Mom could not be swayed, so I left it alone.

Last week, Angel’s class had their sixth grade graduation.  Mom went with us, and she smiled and clapped for all the kids as their names were called (even for Emily).   Afterwards, they served refreshments and Mom and I were off by ourselves eating.  Mom was looking around, and she asked me which one was Emily.  Of course, I did not want to point her out to Mom, so I told her I didn’t know where she was.  She continued asking about her.  What was her last name?  What was she wearing?  I started to get annoyed, so I went to go mingle.  As we were leaving, we talked for a few minutes to Emily and her family.  Mom had no idea it was her.

The next day, Mom was talking about the graduation.  She said, “I hate to say this, but I noticed that not too many people clapped for that Emily.”  I sighed (here we go again), “No Mom, everyone clapped for Emily.  Everyone really likes her.”  Mom shook her head.  No, she insisted that hardly anyone had clapped for her.  She said she kind of felt sorry for her.  Then she asked, “Now she’s the big, heavy-set girl, right?”  I sighed a deeper sigh, “No Mom, she’s small and slim, she’s not heavy at all.”  Mom started to go on some more, but I told her I did not want to talk about it anymore.

In a couple of weeks, Emily and eleven other friends will be over for Angel’s birthday party.  I’m sure there will be a lot for Mom to remember…

Some days, I wonder if my husband knew what he was getting himself in for when he married me.  When we said our vows, we thought that “for better or worse” and “in sickness and health” referred to each other, not our parents!

I really have to give him credit.  I’m not sure if I could do the same if one of his parents needed to be cared for in our home.  His mother passed away before we met, but I got to know his dad quite well before he passed away five years ago.  My father-in-law was a really great guy and a wonderful grandfather to our kids.  But I have the feeling that if he would have moved in with us, it would not have been easy for me.

My husband does really well with Mom.  He’s very patient and he is able to just walk away if she does something that makes him angry.  The only real “hot button” issue with him is if Mom is mean to our dog Biscuit.  Biscuit is our yellow lab, and he is VERY close to my husband.

The other day, he told me something that he had been worried about.  He said wondered what if (God forbid) something were to happen to me, and I were suddenly gone.  Would he have to take care of Mom all by himself?

Wow!  I couldn’t believe he was thinking about that, and wondering if he would be expected to continue caring for her.  I assured him that IF something like that were to happen, then he should call my sister.  Mom would either have to move in with her, or she would have to find good assisted living for Mom.  I told him that he has done enough by being supportive and helping me care for Mom.  He definitely should not feel that he should have to bear that burden alone if something were to happen to me.

I still think he would help if he had to, but he seemed relieved to know that I do not expect him to be a caregiving son-in-law all by himself.

I’m a few days late with this post, but I really wanted to write something positive about Mom for a tribute for Mother’s Day.  Dealing with the dementia that accompanies Mom’s Alzheimer’s is a part of our daily life.  Of course, she wasn’t always this way.  The qualities that I most admired about Mom growing up was her ability to work hard and solve problems in a creative way.  This post is one of my favorite stories about Mom.

When I was growing up as a small child in the 70’s, we lived in a small ranch-style house in central Indiana.  I used to spend a lot of time playing outside.  One spring, we had a cat that had a litter of kittens.  I was on the porch looking for them when I heard a one mewing, but I couldn’t find it.

I looked around for the kitten, and I figured out that the mewing was coming from the top step to the porch.  Our house was built on a hill.  The porch was built out of concrete blocks and it had concrete steps starting near the door to the basement going all the way up to the top of the porch.  The back of the top step had three small holes (for ventilation,  I guess).  The mewing was coming from those holes.

Once I realized the kitten was  in the steps, I ran in the house to tell Mom.  She was sitting down talking on the phone.  I excitedly tried to tell her that one of the kittens was under the porch.  At first she tried to shush me so she could continue her conversation (this was back before cordless phones).  I insisted that she needed to come out, so she hung up to see what was going on.

We went out to the porch.  By now, the mama cat was on the step meowing back to her kitten.  Mom knelt down and looked into the dark holes.  She tried reaching her hand inside, but she couldn’t reach the kitten.  She said we would have to wait until Dad came home.

As soon as Dad pulled in the drive in our green station wagon, I ran up to tell him about the crisis.  He assured me that we would find a way to save the kitten.  I wasn’t worried.  I was still at the age where I believed Mom and Dad could fix anything.

First, Dad tried to move the concrete slab that covered the porch.  He had someone come over to help, and they heaved and pushed for hours to try to move it.  It didn’t work.  They left a huge crack in the concrete, but the slab wouldn’t budge.  The kitten would have to stay under the porch for the night.

The next day the kitten was still mewing for help.  It sounded like he was further down.  When Dad came home, he had another idea to rescue the kitten.  Since the porch seemed tightly enclosed, he thought if he filled it with water, the kitten would float up to the top where we could reach it.  He stuck the water hose in one of the holes and let the water pour in.  This idea didn’t work either.   All the water ended up leaking in the basement.  The kitten had to spend another night alone in the cold (now wet), dark porch.

By the third day, the kitten’s mews were growing weak.  I was still confident that everything would be okay.  I knew Mom and Dad would figure out something, and the kitten would be saved.   Looking back, Mom and Dad were not acting confident.  They had stopped reassuring me that they would save the kitten, and they were talking quietly to each other when I was around.

It finally occurred to me that the kitten had not been able to eat for three whole days.  I asked Mom how the kitten would be able to get food since it was stuck down there.  Mom thought for a minute, then she announced that we would get some food to the kitten.   She reached up in the cabinet and pulled down a tall plastic cup.  She poked a hole in it with sharp scissors and tied a string to it.  She poured a little milk in the cup and went out to the porch.

Mom knelt down on the step and slowly lowered the cup down the hole.   She waited for a minute, then slowly pulled the cup back up.  She smiled over at me and said, “I think I caught a fish!”  When she pulled the cup out of the hole, the kitten was inside the cup!  After three long days alone under the porch, the little kitten was safe.  The mama cat cleaned him up, and we gave him food and lots of love.

I know that Mom must have felt so good knowing that she saved the kitten.  She was able to do something that my dad had not been able to.  Not only did she save the kitten, she lived up to my expectation that she could make everything be okay.

One sad part about dementia is that it causes a person to lose the ability to reason and make sound judgments on their own.  For a long time, Mom has backed up her opinions with the “they say” logic.

“They” are usually news reporters.  Mom sees them as the ultimate authority and believes everything they say applies to us.  Sometimes, she gets the story confused, but she still believes adamantly that what she believes they said is the gospel truth.

Last night is a good example.  She told me that “they say” that “all these people who have lost their jobs are out robbing and stealing from people that do have jobs.”  I responded with an “hmmm… that’s interesting.”  She went on to add that “they say” people should keep their garage doors closed and that’s why she locks the door in the kitchen to the garage (even when we are home).

The other night I saw a commercial on T.V. with two guys in black bodysuits with the word “They” across their chest.  They were the “they say” people.  It made me laugh because my husband and I chuckle at Mom’s “they say” logic, and we wonder who exactly are “they?”

Sometimes I am struck by the similarities in caring for the elderly and for young children.  Even though older adults and young children do share issues such as bathroom difficulties, struggles with independence, and lots of doctors visits, there are some key differences:

Caring for a parent is usually unexpected - Even when children are not planned, you usually still have nine months to prepare for their arrival.  Most people that I’ve spoken with have not had the luxury of advance notice when it came time to care for a parent.   Often a sudden illness or injury creates the need for a caregiving situation.

Becoming a caregiver for a parent is not a joyful moment  - Unlike other milestones in adult life (getting married, buying a house, having a baby) realizing that you have to care for your mom or dad is a sobering moment.   It’s not an event that you send out announcements for or throw a party to celebrate.

It’s difficult to prepare your home to care for your parent - When you’re getting ready to have a baby, it’s natural to decorate the baby’s room and baby proof the house.  If a parent is moving into your house, it’s not clear what they will need and what changes need to be made to your home.  No one will throw you a shower with gifts when your mom or dad is going to move in (though it wouldn’t be a bad idea!).

An elderly parent does not go through stages the same way a child does - When you have a baby, you look forward to the baby developing and going through stages to gradually become independent.  When you are caring for a parent whose condition is declining, it is difficult to watch as they slowly fade and become more dependent.

Roles are not clearly defined when you care for a parent - When you have a baby, the roles are easy:  You are the parent they are the child.  You are completely in charge of all their care, no questions asked.  When you care for a parent, the roles can be quite murky.  Your parent may struggle to hang on to their independence and fight when you need to take charge.

It’s not easy to find support when you have problems caring for a parent - With young children, it’s easy to find someone to commiserate with when you have sleepless nights or have to deal with temper tantrums.  It’s not quite so easy to talk to people about difficulties caring for your mom or dad.  Unless someone has been through the same situation, they may not understand when you need to vent.

Even though caring for an elderly parent has unique challenges and difficulties, there are happy moments.  It’s really a natural way for family to help family, just like we would hope family would help care for us when we need it.

Last weekend was the first time we tried having someone come over and stay with my Mom.  Mom’s Alzheimer’s has not progressed to the point where she needs a lot of assistance, mainly just companionship.  After spending a lot of time finding a sitter for Mom, we asked a teenage relative to stay with her while my husband and I went out.  Overall, this past weekend went well, and I think this will be a good arrangement for future occasions.

The day after she stayed with Mom, I learned a few things that I know need to be worked on.  The kids said that Mom kind of took over and did things the way that she wanted.  She told them that the dogs needed to stay outside (even though she knows we let them in).  She also closed all the windows after I told her to keep them open.  These were not big issues in any way, but I do want our sitter to be able to be in charge and be able to assert herself if Mom does something that is not safe.  I thought that maybe next time I could try leaving a few written rules.  Maybe this would keep the sitter from being the bad guy.  The bad guy would be me!

The OTHER problem is a bit touchy.  The next morning, Mom asked me how much we paid her to come over (she was awake when my husband gave my relative some money).  I told her that we gave her $46.  Mom covered her mouth and started giggling.  She explained that she ALSO gave her and her sister some money.  She told me that she wrote each of them a $10 check.  “Mom!  Why did you do that?” I exclaimed (which I wish I had not done because now she will try to hide it if she does this again).  I explained that I was the one who asked her to come over and I was paying her.  Mom said she didn’t know if we were going to give them any money, and they were “such sweet little girls.”

Now, I don’t entirely fault the girls for accepting the money.  I should have realized that Mom might do this, and I should have talked to them about this beforehand.  I’m sure that Mom insisted, and they would have felt rude to say no.  I know that Mom wanted to do something nice for them, but I can’t have her giving them money when we’re already paying them.  What if next time Mom wanted to give them $50?  What if she started trying to give money to the UPS man or the electric meter reader?  At some point, I will have to take her checkbook away, but in the meantime this could be a problem.

Isn’t it funny how you can solve one problem then more pop up?

Well, last night was our first try at hiring a sitter for Mom so hubby and I could have a worry-free night out.  For the most part, everything went very well.  A few issues came up, but I think we can plan and take care of them for the future.

At 5:30, my cousin’s teenage daughter and her younger sister arrived.  I showed her a few things around the house, then I needed to drop off my son at a birthday party.  Since I had also asked her to pick him up when the party was over, I had her ride over with me so she would know exactly where the house was.  This gave me a good opportunity to talk with her privately.

While we were in the car, she told me that she had just gotten a job at a local assisted living facility.  She will be working a couple of days a week in the dining area.  I was thrilled!  I knew that the experience she gains at the assisted living facility will help her become a better caregiver.  She also talked about her future plans.  Next year she will be a junior in high school.  She is going into the nursing vocational program so that by the time she graduates high school, she will be a Certified Nursing Assistant (CNA).  She wants to continue studying nursing in college to become a pediatric nurse practitioner.  Now I was ecstatic!  I knew she was the perfect person for the job because she’s a relative I trust, and she wants to go into nursing.

I also talked to our sitter about some of the issues I’ve had with Mom.  I told her that if Mom said something that sounded crazy or didn’t sense, to not argue with her.  I suggested she just say, “I’ll talk to Sherri about that.”  I also asked that she try to keep things quiet and calm so Mom wouldn’t get nervous.  I showed her the list with our cell phone numbers and the neighbor’s number if she had any problems.

Before we left, I could tell Mom was acting nervous.  She didn’t like that I had the windows up and she was worried about them being open at night.  I tried to reassure Mom that there would be no problems with leaving the windows up.  I told her the house would get really hot if she closed them (I really don’t want to turn on the air conditioner in April!).  Mom said someone might try to break in.  I told her that I left the girls our neighbors phone number and if they heard anything strange they would call.  I also tried to reason with Mom that if someone really wanted to break in they could break the glass in the doors or windows just as easily as they could cut through the screen.

We were finally ready to leave.  We said our goodbyes and my husband started backing the car out.  He put it in reverse, hit the gas, then we heard a loud crunch…  My dear husband was in such a hurry to go out that he wasn’t thinking and he backed right into our sitter’s car!  We got out to look at the damage.  His truck had only a tiny scratch, but her car had a cracked taillight and some damage to the bumper.  We showed her what happened, and my husband reassured her that he would make it right and make sure it gets fixed.

Finally, we left and went to hear my brother-in-law’s band and my husband got to sit in and play bass for about five songs.  It was a fun night out.  The bar was kind of a redneck/biker bar, so there were plenty of interesting people to watch!  We got home about 1:15 a.m.  It’s been a long time since we’ve had a late night out like that!

When we walked up to the house, some lights were still on and I noticed the windows downstairs were closed.  Our sitter was still awake watching T.V.  Mom was also up pittering around the house.  I asked her if she had been asleep, and she said she had not gone to bed yet.  I knew she was the one who closed the windows.  The temperature in the house was 85, so I immediately opened them back up.   I told our sitter that she could go home in the morning if she was too tired to drive home.  She decided to stay and my husband gave her $46 for staying with Mom and picking up our son.

Everything seemed like it went well, but the next day we learned a few things from the kids.  My next post will be about some things we need to work on for the next time.

One of the big struggles we’ve had with Mom’s Alzheimer’s are the times we need to be gone overnight or an extended period of time.  For the most part she functions okay, but it worries me that she may become confused and need help while we’re gone.  I’ve learned it’s not easy to find a sitter for Mom, but finally I found a teenage relative who is willing to help by staying with Mom.  We had it arranged a few weeks ago, but our plans changed at the last minute.

This weekend we’re going to give it another try.  My husband and I were invited to a party Saturday, and then we’re going to go out to a bar where he and his band will get to sit in and play some songs.  Since we will be out late, I thought this would be the perfect opportunity to have her come over to see how things go.  It will also help that the kids will be home to help out.  If all goes well, I’ll ask her to come and stay with Mom when all of us need to go somewhere.