Welcome to another happy blog entry

I can’t do this anymore. I can’t live with my mother crowding my brain all day and all night long. I need to find a way to have her exit my mind once I’ve exited the building. My health and sanity are at stake.

Today when I arrived, her CNA (certified nursing assistant) told me that Mom had a rough morning. She was asking where I was and why I had put her in a nursing home. She was very upset and confused, and the aid said she had a hard time calming her down.

By the time I got there, she seemed ok, though a little withdrawn, which is happening more and more these days. So my first thought was, “Why tell me this? The moment has passed and she is ok. Why let me know she went through a period of angst in the morning?” I was selfishly upset because I knew I would be able to think of nothing else for the next few days.

And so my mind wandered down a dark path; how often does my mother think this? How bad is she truly feeling? Does she feel abandoned all the time? How lonely is she without me and Dan and her family?

I was worked up to a point of palpitations. And that is when I realized I needed a way to turn this off. When she is there and I am here, we are separate and individual. When we are together, I can be the all-consumed daughter. I can’t sustain this level of investment 24/7. It’s going to kill me.

Yet, how can I untangle myself from my mother? If she is suffering, I am obligated to relieve it. That’s how my upbringing shaped this unshakable core belief. If there is a way, I have to be invested in changing it. I can’t just abandon her.

So where does this leave me? Depressed and hopeless. And welcome to another happy blog entry...

Another way for me does not seem possible

I can’t seem to stay away from the nursing home. I go seven days a week and stay anywhere from 2-4 hours. If I can’t make it, Dan goes.

Yesterday we had a Nor’Easter in Worcester that dropped 18 inches of snow. The news advised all non-necessary drivers to stay off the road. I couldn’t. I HAD to go there. The driving was treacherous in some areas but I simply could not stay away.

Where is this compulsion coming from? There is no reason for a daily check on her as she is truly in a first rate facility: She is always dressed and clean when I get there, I’ve never found her wet, and the staff is delightful. She doesn’t remember within 10 minutes of me leaving that I was even visiting. And she doesn’t seem all that interested in socializing when I’m there. So why can’t I take a day off?

Could it still be guilt? I’m sure that’s part of it. But I think it’s also due to an unhealthy connection I have to my mother. I believe that if I don’t go, both of us will suffer in some way. It’s such a deeply ingrained feeling of…dependency? I feel my time and care is something I owe her as my mother. I owe her my devotion.

My therapist said it’s perfectly fine to take a day or two off and that it is not the norm for the same family member to visit daily. That it is ok for me to have “a life.” I hear the words, I believe them, but I just can’t make the leap. It would feel all wrong.

Something stronger than I keeps me on a daily schedule and I hope I have the mental and physical fortitude to continue. Another way for me does not seem possible.

New Year's Eve Ramblings

I haven’t wanted to write because of the sadness. There is a certain amount of guilt in posting all of this negative stuff. So I’ve refrained in hopes that there would be good news to post. There hasn’t been.

Mom, due to her advancing symptoms, had to move out of the rest home and into a nursing home where she could receive more intensive care. There IS good news in that we were able to get mom into the home of our choice, the Jewish Healthcare Center in Worcester. Odd selection for an old Italian Catholic :-). But truly, they are amazing caregivers and I know she is in the best of hands. A huge blessing.

Today is New Year’s Eve and my heart is so heavy. I feel tremendously heartbroken for mom and yes, for me. Because we live far from my brother, her sisters and nieces, our days are spent together, just the two of us, and it is getting very lonely. Does she feel the loneliness too? My husband and others think not since she is surrounded by people who dote on her…the staff is wonderful. But is she missing her family as well? There are no signs of this that I can see, yet the thought of it keeps me up at night sometimes.

We’ve considered moving multiple times and have even gone so far as to look at properties closer to family. But now especially, with her in excellent care, a move seems less likely.

Dan has been the perfect third wheel. He goes to see Mom whenever I can’t and gives me a break at least once a week. He’ll often join me on the weekends for a visit and bring us supper so we can all eat together on Wednesday nights. What a blessing he is!

So, I guess there are positives to post, and with the New Year I am going to try my best to focus on those. I definitely need a perspective change or else I am going to continue a slide downhill.

Ocean Waves and Trickling Streams

The bulk of my angst this past week has come from my mother’s illness and not so much her being in a rest home. I feel an overwhelming sadness each time she says something distinctly dementia-like. The sadness plants itself in the center of my stomach, causing all sorts of gastro-intestinal problems. The pain floats up like a thin smoky haze and wraps around my heart, causing palpitations and anxiety. I think I have more physical symptoms from my mother’s illness than she does!

She has taken another tiny step further into her disease. She no longer remembers she has a bed at the rest home, what floor it’s on, that her clothes are there. Last night she asked where my best friend Lisa was and thought the rest home was Lisa's house. She has been sundowning every day again so we need to incorporate a new medication to help with that. I’ll be meeting with her psychiatrist on Monday to discuss. It will be a fine balance knocking out the sundowning while not turning her into a zombie.

Seeing the decline, assured it will only get worse, and knowing that we have years of this ahead of us is truly making me physically and emotionally sick. Somewhere in my brain I know her being at the rest home is the best thing so the angst from that ebbs and flows like an ocean wave. But the sadness of her illness is a steady trickling stream.

I long for the day when I will have some happy news to post. When mom and I will both feel better. I pray for it everyday. Just a little relief. A tiny bit to get me through without so much of an internal battle.

As Expected, with a Little Twist

I have a hard time writing this post because of its predictability. Ma reacted as expected – primarily confusion and fear, with a secondary happiness upon seeing people she knew. Dementia stripped her of any memory of the edifice but not the souls who live there. It was like a high school reunion – old faces in a strange but lively hall. I can’t figure it out and should really just stop trying.

Yesterday she was more confused than Saturday. The last time I visited, around 5p, she said, “Lisa! Thank God you are here. I was getting so nervous wondering where you were and how I was going to get home.” I had to explain that she had to sleep there tonight but that I would see her again in the morning. She meekly said, “Alright.” And snap went the strings of my heart.

Yet aside from the confusion, she seemed fairly happy at suppertime. She was interacting with her table mates – two Navy men just like my father was, one Italian who speaks the language in dialect, and Mary - Mean Mary - who calls my mother Roly Poly behind her back (I heard her once and respectfully called her on it).

So we plug along and move forward. I expect to be there at least twice a day and hope to take her out, even for short rides or visits to the house, a few times a week. The anxiety is ever present but I am trying to give it all up to God and leave the work and the future to Him. So difficult when I’m here on earth and He is up there in Heaven.

Just Like the First Day at School

Today, after almost three weeks in rehab, mom will be moving back to the rest home. She is well enough to make the transition back to her permanent living facility.

I am filled with a heavy sense of dread. Mom has become accustomed to rehab, knows her room and enjoys the company of the staff. She loves the daily bingo and her short naps between playing and suppertime. Now, we are, for all intents and purposes, back to square one; the gun is just going off at the start line.

Hello to all the old anxieties - how will she get along with the residents, how will she deal with her confusion, will she even LIKE where she is staying? After all, because of her disease, this is a completely new experience for her. Her memory has been stripped of the eight months she has lived at the home. This is day one at kindergarten, her first hour on the job. And I am the anxious parent with the sick feeling in her stomach hoping that she is liked and she’ll get along. The only difference is I get to literally follow her around (I doubt I'll leave her side today), watch her struggle through every new turn and bump in the road.

Ach, I am filled with sadness and unhappy anticipation today when instead I “should be” focusing on sending positive energy and thought toward this “new” and “first” big step.

Alzheimer’s, in our uneasy and permanent relationship, you are not my friend today. Sometimes I feel as if we’ve gotten close, understand each other like true buddies, but in this moment, it is safe to say we’re cold-stoned enemies.

What a Difference Three Days Make

Mom, with a steady flow of intravenous fluids and now heavy duty antibiotics, is finally showing improvement.

• Her kidney function is at a 2.2, down from 4.8 so she officially is out of renal failure.

• Her white blood count is almost normal.

• Neurology consulted and Mom had a CT scan. She did not have a seizure. Instead, since her blood pressure was so low, her brain did not receive enough blood and her body went into “tremors.”

• Her blood pressure is normal.

• She still has diarrhea and this is the main concern. Infectious Diseases consulted and she is now on Vancomycin, the strongest antibiotic for this type of infection. If this doesn’t work, she would need surgery. But everyone is hopeful the antibiotic will kill the c.diff.

Mom is highly susceptible to dehydration and this is going to be the main concern going forward. Anyone with a parent or loved one in a nursing facility knows that keeping a resident/patient hydrated in that environment is a huge issue.

Before Mom went into the hospital for this third time, we had bought a portable non-breakable water bottle for her with a built in straw. She liked it and drank a bit more, but the bottle when full was too heavy and cumbersome to carry. When I’m with her at the home, I push fluids. The rest home does their best as well. But she just isn’t getting enough.

Any ideas or suggestions? I feel truly desperate about this. If we can’t keep her hydrated, chances of her being hospitalized again are almost guaranteed. And the bigger concern for me…does this mean changing her from a rest home to nursing home is on the horizon? I believe at the nursing home, they are able to administer IV fluids whereas at the rest home, they are not. But I’m not quite sure about this.

And it looks like taking her home is becoming less likely. But that is a blog for another day.