For Mom or for Me?

Lately Mom has been sleeping even more and wanting to eat even less. Those changes are a natural part of moving toward the end of a life well-lived.

My sweet Mom is sleeping on the couch. If they allowed her to nap in bed, she might wake up, get up and fall.
As she sleeps more, they will let her be comfortable in bed.

We watched as Mom took care of Daddy through this stage. She was with him every day from breakfast to dinner, feeding him all three meals because he was not able to do it himself. Although deep in the pit of Alzheimer’s the day came when Daddy firmly closed his lips and wouldn’t allow Mom to give him a bite. As it continued, Mom became concerned and allowed them to put in a feeding tube. He eventually began eating a bit again and the tube was removed but that experience told Mom that she would never make him do something again. It was his choice not to eat and she had taken that choice away.

The next time Daddy closed his mouth and refused to eat, Mom accepted his decision. Although she possibly didn’t realize it at the time, his refusal was a natural part of the end of life process. You might think “process??” because I am talking about a living being but the body has its own processes.

The National Institute of Health tells us “People at the end of life sometimes suffer from nausea, vomiting, constipation, and loss of appetite.” They explain further:

“Losing one’s appetite is a common and normal part of dying -- eating near the end of life may actually cause more discomfort than not eating. A conscious decision to give up food and/or water can be part of a person’s acceptance that death is near.

Providing liquids or feedings via tubes in veins or in the stomach does not relieve hunger or thirst, so this is not recommended near the end of life. These types of treatments can also cause discomfort rather than helping the person feel better.”

As the body begins to slow and shut down its normal functions, we can actually cause our loved one pain by insisting that they eat. They naturally have no desire to eat because their body is telling them it is shutting down their digestive system.

It’s hard to understand that our loved one isn’t “starving to death”.  Dignityhealth.org tells us “Remember, the person is not dying because she is not eating. She has stopped eating because she is dying. Starving is an emotionally loaded word that usually refers to someone who wants food and would eat it if he had some. But a person who has stopped eating and drinking has actually simply begun the natural process of dying. These persons rarely feel hungry and sometimes even the smell or thought of food is nauseating. “

So, as Mom is sleeping more and more and eating less and less, it is important to ask ourselves, “Am I doing this for Mom or am I doing this for me?”

Let’s let Mom decide.

Standing up, falling down, edema here, edema there…

Life goes on, even for my 98 year old mom, but not without its ups and downs.  I just received the fourth call in less than a month telling me Mom was found on the floor in her room.  They haven’t seen her fall because it was always at night.  Last night they heard a sound and went in to check, finding her on her side near her recliner and wheelchair. As all the times before, they couldn’t find any injuries and she just wanted help getting up.  Thankfully, it seems she is still bouncing.

Falls during the day aren’t an issue at this point because she stays in her wheelchair or rocking chair in the living room.  She is watched over there and as I’ve said before, from her vantage point in either chair, she can watch everything that happens there including all the comings and goings.  If the activities don’t keep her interest, she just snoozes - by that I mean falling sound asleep.  :)

We aren’t sure what has her getting up at night.  They speculate that maybe she had to go to the bathroom but we don’t know because she has typically fallen by her bed.  Last night she was headed away from her bathroom given where she fell.  If the timing continues, I may contribute it to the cycle of the moon because the falls have occurred within a day or two of the full or new moon.

Floating edema is another interesting thing we’ve experienced with Mom.  Back in the 1970s she sprained her ankle while she and Daddy were camping.  That ankle always had a tendency to swell after that injury.  Fast forward to the last couple years and the ankle was swollen all the time.  Last year when she was diagnosed with a mass in her abdomen, both ankles and her feet were swollen.  The doctor thought it might be an indication that the presumed cancer was affecting her lymph nodes thereby causing fluid retention.

Interestingly, shortly after I bought her Foamtread slippers in May of this year, the swelling went away.  Then suddenly her left hand swelled up like a balloon!  The nurse at the facility initially thought it was cellulitis but we decided that wasn’t the case because the symptoms didn’t mesh.

Over the summer, her feet continued to be fine while her hand would swell and cause a bit of pain here and there, then suddenly, it would be almost normal.  Since the end of September, her hand and feet have been normal.  ??  When I visited the other day, her right ankle was swollen again although just a bit.  It’s one of the mysteries of Mom!

Last weekend a few of us were able to attend the Thanksgiving dinner provided by the facility. They provided a wonderful meal and I watched my sister very lovingly and patiently feed Mom the meal.  Mom can still feed herself but gets confused at times about how to go about it and I know my sister helps her eat when she visits in the late afternoon. Watching them at the Thanksgiving meal, I could tell that Mom enjoys the help and attention and it made me feel good to see the connection between the two of them.

I love the brief moments of clarity…

Mom’s routine continues.  Her aide awakens her in the morning and gets her dressed and then she has breakfast in the dining room with all of the residents.  After that, the majority of the twelve residents gather in the living room for the morning news, exercise and one or more activities.  Mom sits in her rocking chair there with a view of the entire area.  Although she doesn’t participate in the activities any longer, she holds her baby and watches everything happening around her as the morning progresses, snoozing here and there.  Twice each week her morning routine is disrupted briefly for a shower which makes her tired and she snoozes more.

Snoozing after her morning shower.

Lunch time arrives and typically she is ready to go in the dining room and eat.  The times she refuses lunch are very few and far between.  She may be 98 but she still eats well, just small portions.

There are more activities in the afternoon either in the living room or the TV area.  Her preferred seating in either area allows her a view of the comings and goings of the staff and visitors.  It’s very different from when she lived with my brother and later, me.  At our homes she spent all of her time looking out the windows, watching everything happening in the neighborhood.  Now her neighborhood is indoors and has enough activity to keep her interested.

Five o’clock comes and it’s time for dinner.  Again, Mom eats well.  My sister reports that sometimes she has to remind her how to start eating but she seems to take off well once started.

Evening is more time for sitting and watching until it’s time to get ready for bed.  Days flow one into another with the routine. 

While her days may be consistent, we never know exactly what we’ll find day to day.  Mom, for the most part, is past her combative stage, although it will pop up here and there, mainly at shower time.  She is definitely past her anxious stage – at least what seemed anxious for my very laid back Mom.  She typically smiles at everyone and I hear that she is pleasant.  I know when I arrive she is always pleasant.  She just doesn’t always know who I am.

I always carry my tablet and I use it to show Mom pictures of family.  I start with her “momma” and “daddy” because she can always recognize at least one of them, usually both.  I move on to pictures of Daddy or her and Daddy and mention that he is her husband and my daddy with each picture.  I tell her that she is my mommy and I am her daughter.  Her response varies each time but if she didn’t recognize me as “hers” when I arrived, she usually knows by the time I leave.

If things are going well, I’ll move on to pictures of me and my siblings and I go through the names.  I was at that point the other day when, in a brief moment of clarity, Mom looked at me and said, “You were named after my mom.”  Indeed I was!  My middle name comes from my grandma’s middle name!

She is seldom “here” but when she is, it pulls at my heartstrings.

Wheelchair… Walking… Walking… Wheelchair

I never know what I will find when I arrive at Mom’s.  Some days her wheelchair is in her room or off to the side of the living room and other days she is sitting in it.  I leave it to Melissa and the other aides to keep an eye on her and they seem to have a good handle on how she is doing.

Last week I arrived to find her sitting happily in her rocking chair in the living room, holding the baby.  After a nice visit, I walked her all the way to her chair in the dining room.  As usual, it took her a minute to stand and get her legs under her and it was slow walking, but she did it happily and like it was the normal thing to do.

 

On Saturday, we joined her for the home’s Thanksgiving dinner.  I arrived just before noon to find her in her wheelchair and Melissa had dolled her up and fixed her hair.  She looked so cute and very happy to see everyone!  She ate every bit of her meal and half of her pumpkin pie before she was full.  It wasn’t long however, before we could see how tired she was and that she was trying her best to stay awake.  I finally told her it was okay to snooze and snooze she did!

I arrived Tuesday to find her freshly bathed and sitting in her wheelchair visiting with the hospice nurse.  Mom was running a temperature and the nurse said her heart was racing but you never would have known.  She was smiling and laughing and talking non-stop.  She had refused her breakfast that morning so while it was hard to tell at the moment, it was obvious that she wasn’t feeling well.  It was also one of those definite wheelchair days.  I needed to raise her up just enough to put the alarm under her that goes off if she tries to stand up.  She struggled to get out of the chair even with my help and couldn’t stand.

The difference between good days and bad days is amazing!  I’m just glad she seems happy either way.

While the nurse and I were talking with Mom, the nurse mentioned the possibility of Mom suddenly hemorrhaging.  The doctor wanted everyone around Mom to know that, given Mom’s tumor is bleeding regularly although a small amount, she could suddenly hemorrhage and there would be a huge amount of blood.  She didn’t want anyone to become scared or panic if it happened.

Luckily for me (or not), I have experienced it myself so am aware of what it is like.  My grandma, Mom’s mom, died from a hemorrhage so it evidently runs in the family.  I also know that if it happens to Mom at this stage, it will take her life.  I am prepared and I believe my family is also.

All that said, the next time I see her she will probably be walking again…  J.  I bet Daddy is wondering when she will finally give up and join him!

So back to food…

The story of food in our family is complicated yet simple.  Growing up, if it was grown on the farm, we ate it.  Daddy planted a huge garden every year, first with a horse (before my time) and later with a tractor.  Mom not only picked fresh vegetables and fruit for our daily meals but canned and packaged more every day to hold us through the winter and to harvest of the next growing season.

We also had a milk cow and raised our own cows for beef, chickens for eggs and meat, and rabbits.  Daddy and my brothers did the butchering and Mom packaged it all up for the freezer.  So between the garden, the animals, the walnut and fruit trees and berry and cherry bushes, we ate well!

As all of us kids grew, married and move out, Mom continued putting up food for quite a long time, even putting up enough that we all had some too.  My girls still like only canned green beans and frozen corn because that’s the way Grandma made them!  It wasn’t until Daddy was too far down the path of Alzheimer’s that she quit but she still provided Daddy with wonderful, well-balanced meals.

The gardening, canning and cooking skills eventually faded in the face of Mom’s dementia.  As I said before, we missed the signs for a long time. 

When we finally realized the situation, I thought I could improve things once she moved in with me.  I was able to give her healthier evening meals but I quickly decided to stick with her preferred breakfast and lunch because I found I had to pick my battles.  Her preferred breakfast and lunch may not have been the healthiest but they weren’t horrible.  So I left those alone and instead fought the bathing and other battles.

What I didn’t realize, until Mom moved to the Alzheimer’s facility and began eating their planned meals, was that Mom obviously has some digestive issues caused by particular foods.  Again, we are in some ways too accepting of our situations.  We knew that Mom made many trips to the bathroom every day – sometimes as many as five times in just a half hour.  We didn’t think about looking at the food she was eating, we just thought she had issues with digestion in general.

Now, after almost a year in the facility, Mom’s aide, Tina, and I have come to the conclusion that Mom has trouble digesting milk in any form.  I can always tell now when she has had some type of milk with a meal because those are the times she is constantly running to the bathroom – even in the middle of her meal.  Most days, however, she is able to have several hours between trips.

Despite the issue, Tina and I haven’t made a recommendation to take all of Mom’s milk away.  After all, she’s 96 now and why would we want to prevent her from enjoying ice cream?

Mom's favorite - chocolate!

If we would have known this years ago – hindsight is 20/20 you know – we could have helped Mom make changes to her diet.  For now, we’ll just try to keep the milk intake to things she really likes.  Like ice cream!

Food can be a sign…

One of the signs of Mom’s decline happened so gradually that even though we recognized a total change in the long term, we ignored the incremental changes as they happened.  Those changes revolved around food.

I’ve mentioned the schedule Mom lived by several times.  When we were little everything thing ran on schedule.  That schedule continued through Daddy’s Alzheimer’s and probably helped Mom care for Daddy during that time. 

That schedule is what we used to gauge Mom’s ability to care for herself as she got older.  As long as she was getting up, fixing and eating meals, and going to bed at a regular time, all was good.  Or so we thought…

What we weren’t seeing were the little changes.  She typically had cereal for breakfast with reconstituted nonfat dry milk.  On Sundays, she would have an egg on toast.  Lunches varied (years ago) depending on what she had and wanted to use up.  She might have a sandwich or she might have some leftovers.  Dinners were small servings of chicken or beef with a vegetable and either bread or potato.  Although Mom never was one to use spices, she always served well rounded farm meals and she continued that practice in her little kitchen after moving to my brother’s.

Breakfast stayed much the same over the years.  She continued to eat cereal and milk but at some point started heating the milk up a bit because it was “too cold”.  That was fine until my brother had to replace his microwave in the few months that she lived there.  She no longer had the ability to learn how to use it.

Lunch became very regimented.  She would have a slice of lunchmeat and a slice of cheese on two slices of bread.  She placed the sandwich in a half sheet of paper towel and put it in the microwave it to warm it – until the new microwave came along.

Dinner was the most interesting change.  Instead of a little plate with separate foods, she began creating little casseroles.  She was so proud of them!  Actually, she would break up a piece of bread in a little plastic container and add other things on top.  Sometimes it was leftovers from my brother’s meals – he didn’t dare throw any food away!  Sometimes it was a portion of a can of stew or soap.  When she first started this habit she would also put some vegetables in the mix but over time that changed.  Her dinners actually became more starch than anything else.  Her little creations were put in the microwave for warming – until the new microwave came along.

Once the new microwave came along, my brother was able to help with the use of it in various ways so that she was able to get her meals.  It wasn’t long after it came along that I started making the trip up to be with Mom during the day and learned firsthand what her meals had become.

As I look back, I realize that Mom was probably malnourished but we didn’t know it.  The story continues next time with how the story of food as a sign continued after she moved in with me.

Signs and (of) Denial

Oh, denial!  It is a stage in everything that we face in our lives, good and bad.  We see the signs of what’s ahead or what’s afoot and we don’t want to recognize them.  We gloss over them or totally ignore them or chalk them up to a “passing phase”.

I know this only too well.  My family is so loving and accepting that my daughter was 10 years old before she was diagnosed with epilepsy.  For years my call to her was “Earth to Jessie” because she was sitting right in front of me and not responding.  Grandma and Grandpa, aunts, uncles and cousins, we all said the same thing, “It’s just Jessie.”

It wasn’t until Jessie was 10 and she had a complex partial seizure lasting about 20 minutes that we realized something was wrong.  I finally took her to the doctor and started the long journey that continues to this day.

Years ago, Daddy realized that memory problems were interfering with his ability to do his job.  As a teacher and head of the science department at a local high school, he was missing meetings that he had scheduled and forgetting the names of his students and co-workers.  He retired at the age of 61 and unknowingly started his journey into Alzheimer’s.

You would think that we, as a family, would learn from the past.  Well, we’re still those “accepting” people that we’ve always been.  Mom lived with my brother for 24 years and during the last 10 or so years there, she began her journey – but we were oblivious.

I can’t tell you the order of the changes because, of course, we weren’t keeping track.  As long as she continued with her normal schedule of eating and sleeping, we figured she was doing too well to need help.  Truth was that things were changing even though the schedule wasn’t.

She had problems with dizziness so we moved her to the main floor to avoid steps.  She developed problems with constipation and talked about it a lot in inappropriate places.  She heard a doctor on TV say that an aspirin a day was good for you so, unbeknownst to us, she decided to take an aspirin each day – a regular one, not a baby aspirin.  Next thing we know she stops going to church because she’s filling the toilet with blood whenever she has a bowel movement.  The list of changes goes on and on but we were all in denial because her schedule hadn’t changed.

Please don’t think we ignored the problems.  I took her to the doctor for many problems and we fixed everything we could – hiding the aspirins that were helping the constipation aggravate her hemorrhoids, getting her on stool softeners, encouraging her to walk around the house to keep moving and eliminate some of her pain caused by sitting too much.  Truth was, though, we were fixing issues but not looking at the overall situation.  She was no longer bathing, her sleep was constantly disturbed, she stopped reading, stopped watching TV, stopped going out of the house, and more.

So, wondering if it’s time that your loved one needs help?  It’s time to dig beneath the surface and punch through that wall of denial.  But don’t feel bad – you’re not alone!