She was starting to breath shallowly. She had a weak voice and unfinished sentences. She had stopped eating and had been suffering with pneumonia for a week. After talking with the nurses, it just seemed best to call the family. She might die; she might not, but they still wanted to see her “one last time”.

Who knew that they would all come!! OMG!! If it weren’t for the fact that my sis in law (a saint in more ways than one) took over, I know I would be overwhelmed with the energy all these folks brought to the place.

I just had to leave the scene. My third daughter was nearing labor and I was to be present so that was my “excuse” to Mom. So I spent most of the next three days with her.

Meanwhile, Mom’s only daughter came to stay with her for a few days and in the process she convinced Mom to try harder to hang in there. Mom’s oldest son decided to stay over and sleep in her room as now the anxiety had dear Mom spun into paranoia – crying for someone to hold her hand all the time. She couldn’t be left alone.

After three days her daughter left and Mom was even more anxious. Eldest son still slept in the room at night but even he was wearing out. My daughter had a beautiful baby boy and was doing fine so I had no excuse not to visit Mom so I went to see her.

It was Hell.

Hell is crying and not have anyone hear you. Hell is when nothing soothes. Hell is being afraid but not knowing what you’re afraid of and not being able to escape it. Her life was like a bad nightmare that she was living in.

That is what Mom was dealing with. Years of night fears all came back to haunt her all at once but they lasted all day too.

How can you possibly help a person like that? It’s as though I wasn’t even there to her. The worst part was that I had to tell her she couldn’t come home – that I couldn’t take care of her at home anymore. After her daughter had told her that if she just got better (ate her food, drank her water, did her therapy) she could go home and she got all spun up and excited, I had to let her down – I had to tell her “No” again, and I think she died inside a little more.

To top it all off, I had to ask my brother in law to wean her off the 24 hour hand holding. He understood, thankfully. But Mom is a basket case.

As I am typing this I wonder how she made it through the night. When I left her last night, she had me set her in bed just so. Her call button had to be just so, her light string just so, her bed control… just so. Then she asked me to stay till she fell asleep. I told her I would stay 5 minutes. Firmly and kindly. Her eyes met mine and there was contained fear in them.

My heart broke – again. As I left I peered over my shoulder and saw that she was feeling around for her call button which was pinned to her gown. When she found it, she clutched it like a lifeline.

And we all thought mom was dying.

Oh God, take her home. And if now is not the time, give me grace and strength to do what is best for all of us.

Oh and in case you are wondering where Dad is in all this. He had hernia surgery last week and is convalescing in the same facility as Mom just in different rooms. But that is another story.

She had been taking B3 at a maintenance level for several months (3 250mg tabs per day).  But all that stopped when she had to be admitted to the hospital and later the long term care facility.  I just plain forgot.

She was beginning to thrive at the LTC from all the social activities and physical therapy but she still hoped to come home to in April her doctor agreed she could come home under my care. It took about 8 days to process the move and in the intervening time there began a subtle change. She began to get anxious again; confusion and general goofiness. I still brought her home but there was something not quite right.

Still it didn’t click that she was missing the B3, though.

Mom didn’t stay home for long, either. She was getting more agitated and by the fourth day at home she developed a fever. Since she was having trouble urinating I suspected UTI and sure enough that’s what it was. I had to send her back to the LTC and when that happened something snapped in her. She came unglued. If she could have set her feet and arms she wouldn’t have gone through the door.

Once she was there, the admittance nurse checked her O2 levels and she was dangerously low. So she got on right away and immediately feel into a deep sleep. Once she awakened she began a fight with the very same nurses that only the week before were her friends. She had been

To top it off, she wouldn’t keep her oxygen on. She tore it off and fought the nurses and therapists. She tried to take her shoes off when they weren’t there. She tried to put her panties on and off.

It wasn’t till just a few weeks ago that it all came rushing at me that all her confusion and general goofiness was because her Alzheimer’s was coming back – in spades. It took a nurse at the LTC facility she was staying at to jar my memory. But once she did, I began my campaign to get her on B3 as part of her daily meds.

I wrote her doctor and laid out the case wondering if he would  believe me that she had had great relief from her confusion and even her anxiety levels decreased before when she was on high doses of B3. I was pleased when one of those nurses told me she was scheduled to have it 4 times a day.

Now we were racing against her possibly dying from pneumonia but I knew that if she got enough niacinamide she would begin to improve. As of today she is recovering from the pneumonia slowly and is showing signs of calm already even after only 10 days of B3.

I plan to keep this updated to let you know how Mom does on B3.

She swore. She yelled at all of us. She tried to get out of bed and fell. Because of anti abuse laws, there can’t be rails on the beds. So they had a bed alarm on her. It was ringing constantly.

She hated the smell of Germ-X which is what they use each time they enter the room. So whenever she smelled it she told the person ‘I hate your aftershave’. She saw men entering and leaving her closet like it was an elevator. She saw people walk past her second story window.

She didn’t recognize me most of the time and yelled at whoever came close. She accused them of pinching her and thought everyone was rough. When she did recognize me she was very possessive and wouldn’t let me leave her. At one time when she did know me she made me stay with her. She made me leave my daughter as hostage when she did need me to get help and the sad thing is she was serious.

Anytime someone had to move her she said hateful things to them.

Had I been more prepared I wouldn’t have taken any of my kids to see their grandmother like this. Yet we learned what love is. Love is truly love when given toward one who cannot reciprocate.  That is the closest thing to God like love there is.

The crazy thing about coming off Alprazolam that fast is that the hearing becomes super sensitive so she could hear us whispering about her. After years of near deafness, this was odd.

So, why did she need to come off alprazolam. I am still not really sure why they took her off for those first few days after being admitted to the hospital for the bowel obstruction. I think the doctor said she had so many things going on that they wanted to take that part of the equation out of the way.

So, after 72 hours they put her on Lorazepam which is similar to Alprazolam mostly because it was that only way to get it into her since she wasn’t taking anything by mouth and she was on IV. The crazy symptoms disappeared and she “returned” to us. She was still confused but the fighting, crazy person was gone.

Wow, I really hope I never have to see that again.

I think that is the hardest part of elder care. I have told many I have come in contact with that I would almost rather deal with a hormonal teenager than my dear demented mother in law.

So much of the story of the past 5 years has been left out but I will begin to try to tell it, if only for you, dear reader.  Maybe it will help you with your own struggles with mom or dad.

I’ll pick up the last few months for now to bring you up to speed. Mom (remember she is my mother in law but Mom is just easier to say) had to go to the ER at the first part of February. She had had a runny diarrhea for days, a fever, acted confused, was vomiting for hours and had bad stomach pains so against her wishes, we called “the guys” (paramedics) to come take a look at her. Yup, something was not right so off to the ER.

Mom was very sick. She had been vomiting for hours and at the ER they almost pumped her stomach to stop the process as she was getting so weak. The fear was that she would aspirate her vomit and that would be deadly.  Thankfully for her sake, she stopped long enough to just leave her be.

It turned out after all the testing that she had a partial bowel obstruction hence the vomiting . The contents of her last few vomits were stool like…  AND an advanced UTI which explains the confusion the last few days prior to the ER visit. Don’t ask me why I didn’t see the symptoms of UTI as I had seen them twice before. I just didn’t.

Anyway, she was very upset that she had to be admitted to the hospital and yet there was no choice. She needed to be on at least two antibiotics on IV and she was raging with the fever and the confusion caused by the UTI.

She did stay at the hospital for 6 days till the concern over the bowel obstruction had cleared. The doctor told me she would leave the hospital the next day so I came prepared to take her home. When I got there, he took me and husband aside and basically told us, get on with your own life. Your Mom is taking away from precious time with your family life. It’s time to have her cared for at a rehab/long term care facility.

After years of hoping to never be institutionalized, now came time to face facts. She was too sick to stay at home anymore. After years of caring for her at home, I had to tell her no. This “no” seemed to kill her and a bit of me died too.

Sadness and relief came at the same time.  And guilt. Even though I never promised to care for her no matter what, Mom assumed I would. I finally had to tell her she was too ill for me to take care of her at home. My family was suffering for all the time I was spending with her.  And telling Mom ‘No” has been the best, hardest decision I have ever had to make.

Mom is doing so much better of late. Why? Well, at Dad’s urging, back in May of 2010 she began taking large doses of Niacinamide (B3) – 250 mg every 3 hours. He read in one of his medical journal subscriptions about how it is used to cure Alzheimer’s disease and other forms of dementia. But it also seems to affect mental illness as her anxiety levels have come down to what I would call normal, like most of us deal with.

The result is that she is less stressed – more “with it” – more cooperative. While she still hurts as much as ever (I suppose), she is dealing with it less emotionally using the usual pain meds and not craving more. How can I say it… she is just more reasonable – doesn’t take her meds at the first instance of pain but is willing to see how the pain goes. In a way she is managing her pain better than ever.

Since there is no known toxicity levels when taking B3, he had her take it every two hours.  Within a month, she was noticeably more interactive, more able to reason; to think.

The fall-out though, is that she is more able to decide what she wants to do with her life. This is very frustrating for Dad after so many years of him just telling her what to do. She seems to be her own person for the first time in years, even since I’ve known her. While he is glad she isn’t losing her mind to dementia, his old chauvinist leanings are being taxed to the limit. The irony of all the years of his searching for a cure for her pain is that he didn’t think of the ramifications.

You see, Mom has been slowly losing her world.  Many years ago, due to back pain, she became confined to her small room.  After years of being active in church and raising a family, it slowly crept up on her.  Frankly, she could have fought it off and dealt with the pain better but each of us learns to deal with life in our own ways.  For her, she just sat down and decided to let the pain be her companion.

Not too many years ago deafness has continued to shut her world down.  No more country music and she can only make out the Walton’s reruns from her memory.

And now her vision.  Why?  Well, the sad truth is that all the strong pain meds she has taken for years have apparently been a big reason why she has lost most of her hearing and now her failing vision.

What makes some us sit down and quit and some of us get up and fight?  Why do I get impatient with Mom?  I see she gave up years ago and all she is suffering today is due to her quitting.  But what I see more clearly is that the reason I get impatient with her is that, for all my tough, “get up and fight” talk, I feel like quitting, too – sometimes.

And that makes me mad!  My impatience is a sign that I see the same thing in me.

They say admitting it is half the battle, so now you know.  And now I can maybe have a bit more patience with her, knowing how easy it is to just sit down and quit.  And now I can take myself in hand and resist the easier path of sitting down.

Caring for Mom has taught me many things about myself and, for this, I thank God – for his wisdom is seeing I needed to come face to face with my lazy side.  It has been hard watching her wither.  But now I know why.  Because I saw me in her – if I don’t make a point of being proactive with my health and staying “tight” with God – she will be me in 30 years.

I want to live everyday to its fullest, thanking God, praising Jesus, serving my husband, caring for my children and in-laws – right to the very end.  If God should give me the years, I will LIVE until I die.

Time went on and I had a family of 9 children; she had 5. They moved away due to economic hard times as did we. Then 3 years ago, it became rather apparent who would get the main job of caring for our in laws – my husband and me. It turns out I have a better temperament to deal with the inconsistencies of an aging older man who’s used to being independent and the rooster in his hen house.

So, Mom and Dad moved in next door. Remember, these are not my parents so it has been a mixed blessing of having their respect and also trying be a diplomat when my father in law struggles with losing his health and freedom.

At first I really bucked at this new “hat” I had to wear. I really didn’t feel qualified to take it on! But as things have turned out, all is as good as it can be in our circumstances.

Nursing home is still not an option for them, emotionally speaking as well as financially. Although I did have to lay down the law that I will not be able to take care of either of them if they get hurt like a broken hip or whatever. In that case, I had to tell them that they’ll have to recover in a nursing home or whatever suitable place.

What do you do? The fact remains: they are on their last leg of their journey of life. What a place to be when you are not emotional prepared. But are any of us ever prepared? Not really. We sort of sweep it under the rug.

But then one day there it is. Then your back is up against the wall. If it weren’t for my faith in God, I would have long since “lost it”.

You see, I am a problem solver. I can get very distracted solving problems, all the way from unclogging a sink to lengthening a handle to make the chair lever more usable for my mother in law.

But what do you do when you come face to face with something that has no solution? What do you do when what you have is a predicament that you just have to “deal with”?  Well, that is the key – learning how to deal with it.  It is times like this when chronic illness and failing health are just something to deal with.  Like death, there are some things you just must face.  Roll up your sleeves, dig in and take it one step at a time.

I am embarking on uncharted territory when I have to face the unsolvable.   Frankly, I thought I was a very devout, faithful believer.  But when faced with this kind of thing, well, it is time to really let the rubber meet the road in your faith.  All my fixing tools are gone.  I just have to walk in faith and deal with the daily inevitability of ill health and the long dying/death of my in-laws.

Is there hope?  That depends on how you look at all of life.  If you take a larger view, there is always hope.  I remind myself that what I see is not the whole picture.  My Father sees it all and in the whole scheme of things, what I am going through is no new thing.  I just need to learn to deal with a new way of living.  I am now learning to live the Serenity Prayer:

GOD grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.

I am the first one to tell you that I know that it isn’t Scripture but it is truth.  May you be able to learn the difference between the things you can change and the things you need to accept.

So how do you face it?  That has been my daily question and daily I get to discover the answers.  Each person – each situation is different.  In this blog I will share my gleanings so that perhaps it will help others.

I will tell you it is a lonely often sad job – caring for your aging parents.  There are lots of books on how to deal with various aspects of daily care, emotional deficiencies, helps available, etc.  I have gleaned much reading books which I will recommend later.  There are some forums online too if you need “community” which I found I do.

Right now, I will be upfront and say, it is hard to care for my in-laws – the hardest thing i have ever done and I have raised 9 kids at various levels of maturity.  Dealing with their struggle with loss of independence.  While learning compassion, it helps me to remember how hard it must be for them to give up something that has been so much part of their lives.

No, caring for aging parents is harder than raising kids and well, I think God prepared me for this by first letting me learn through raising my young adults (teens).  We all know the struggle of parent and growing adult child!!  You find yourself breathing a sigh of relief as they find their way to their own life.  I love my grown children but there is no doubt I was ready for them to leave the nest!

Well, caring for my in-laws is like that only, well, when they leave, it will be leaving this world.  Hence the rather dismal tone and feel to this season of their life.  Certainly we will rejoice when their frail, pain filled bodies are set free of this world – but it is nonetheless a melancholy time – no doubt.

Feel free to share your insight and any encouragment.  till next time…

The other day I noticed that Betty’s lips looked swollen and she commented that they felt hot. Her tongue was red too.  I called the nurse to see if we needed to get seen.  We ended up heading to see Rob, her PA.

 Turns out she wasn’t drinking enough water and since she is a mouth breather her mucus membranes were inflamed.  

He noticed, too, that she is anemic and ordered a blood test to confirm that she was unsafe.  Now she needs to take iron + B vitamins to help build her blood.  She may need a transfusion if this doesn’t work.

Wow, you just sort of plod along in life and don’t notice the signs till you crash.  I mean to be more careful in the future.  Life is fragile. Cherish it and care for your own body!

My “trophies” hung in the walls of my mind.  Knowing my kids and husband didn’t go to the doctor for typical illnesses and that even the toughies like pneumonia and bronchitis hung on the wall right up there with regulating/curing my lifelong digestive problems including chronic appendicitis (yes, it can be chronic).

I had built such a confidence bordering on pride in my achievements.  I could tell you you can heal anything with full expectation it is true.  But I lost track of the fact that I could only make these choices for my young children and willing husband.  As my children have gotten older, they choose to “forget” the cures Mom gave them all those years.  So far, only one of them has gone to the doctor for a mess of carbuncles in a very uncomfortable place.  But all of them still call Mom and ask, what do I do for_____?

Enter two aged adults with habits well set.  I knew (I still know!) if they would just change some things they would at the very least improve their quality of life and maybe even reverse some of the problems that cause their pains.  But old habits die hard.  And when you hurt – it takes all your strength to get through it not to mention trying a new lifestyle.  We turn to comforting habits of food and drink.  We tend to cling to the warmth of a chair or bed.  We don’t feel up to rocking the boat – it might toss us for good!

I love Betty and Ross enough to respect their choices for good or ill.  They have enough to live with without me making them upset with possible cures.  So like I brought up in the previous post, I will rest in my role of comforter and part time caregiver.

Thank you, God, for giving me the grace to love others when it is difficult.  And after all isn’t that what love is?