“Here I am, Lord. Is it I Lord ?”

Alzheimer’s is such a weird journey. It is so convoluted and each person’s experience is so very different. I am involved with several groups and I see photos and read comments from family members who care for their loved ones. Some have them in special facilities, others have them at home with them, and still others are trying to help from afar. In any of these scenarios, the experience is pretty much a unique one. But the thread of Alzheimer’s runs through them all. I keep looking for markers and “points of no return” with mom. And when I see them, I inwardly cringe and outwardly square my shoulders and jump back into the ring to continue to fight this Alzheimer’s thing.

I like growing flowers. I am learning so much about which ones grow in our northern climate, and which ones over-winter well. And then there are those that the box-stores sell that most of us who are gardening laugh at, because they will not last up here. Spring and summers are capricious. Some days are hot and some days the winds howl and the rains pour down. Most box store plants don’t make it. The ones I have planted bring me such peace. The colors are vibrant and the plants are hearty. And I usually just sigh and smile when a new flower opens. It is pretty addicting. And it is pretty much the opposite of watching a loved one lose their battle with Alzheimer’s.

This past month we have seen incredible changes in my mom. My mom is no longer on any of her previous medications, other than her anti-depressant. She gets Tylenol several times throughout the day, to help with her arthritis pain (along with liberal use of Icy Hot on specific joints), and a daily multi-vitamin. That is it. No long list of medications. Her doctor feels that exposing her body and internal organs to the chemicals in her medications was not worth any of their benefits, and that they were not doing much to increase her longevity or quality of life.

This past week, mom was evaluated for her Medicaid Waiver. I was so stressed for her, that I spent the day prior doing power cleaning. The house was spotless. LOL. And I informed mom the night before that this team was coming, and it just pissed her off no end. She did not understand that getting the Waiver is a good thing…for all of us. The next morning, the morning of the interview, mom could care less. It was hard to get her moving and she was being so nasty to me. Then the team starts arriving and mom comes out all smiling and hugging and “It’s so good to see you again. I have missed you” to people she has never met before, trying to fake her way through things. LOL. She really put on a show. Being all independent and capable. I was so worried she was fooling them. And I was quietly praying the entire 2 hours they were here. Afterwards, the people who are part of our support team went outside and chatted with the assessor and then came back inside. (Mom was watching TV, oblivious to the entire process by this point). They told me that the assessor saw through mom’s posing and pretense, and that we should be getting all the assistance she is needing. I just stood there and cried. Okay, I held it together pretty well, although I did get a supportive hug from one of our team, but I fell apart after everyone had left (I went into my closet, sadly, to hide from mom and be able to cry and have her not hear me). I am strong on the outside and everyone tells me what a great job I am doing, but on the inside I am crumbling. My mom is dying. In front of me. And she is not going quietly or simply. She is fighting for every moment. And I am so very tired. Emotionally tired, and some days, physically beat up from all she puts me through on a daily basis. Sigh.

One of the things that a team member told me was that Alzheimer’s is a degenerative disease (which we all realize and know). However, what we see, and experience, with our loved one is just a part of the effects this disease has on people. If we see a sharp decline in their cognitive functions, we need to realize their bodies are declining on the inside, as well. The decline is in common functions like breathing, as well as walking and talking, abilities to eat and, to even swallow. Alzheimer’s disease is a degenerative brain disease, killing brain cells as it progresses. And you do not recover from it. Once dead, brain cells do not regenerate. Ever. Eventually the cells that control the heart, the lungs, and the organs, also fail. And now that her cognitive decline is speeding up, other things are starting to fail – her strength is poor, and her sense of balance is off. She actually fell onto the lap of my son’s girlfriend the other night, while trying to stand up from the couch. Some days she walks into walls, missing the corners of the hallway. She gets lost going to the bathroom, walking into the mud room or laundry room, mistaking it for the bathroom. Some meals I serve, she just cannot eat and will hide it from me, saying it was so tasty. She doesn’t realize that I wash all the dishes and I see what she covers up. LOL. She is preferring things like milkshakes over most other foods. So we are changing meal plans to accommodate her decreasing ability to consume foods.

On the other side of this, I think I don’t have it that bad. LOL. Strangely enough. I see articles and photos of people struggling with Alzheimer’s who cannot walk on their own, breathe without oxygen, or who cannot get out of bed. Mom still puts on her earrings and her White Shoulders perfume, along with lipstick, before she says good morning to us. She can barely see her watch and is constantly thinking it is wrong, because she sleeps for hours and hours during the day and has no idea where the day has gone. I have to scrub the bathroom more than once daily (my hands are baby soft from all the scrubbing) because she has no concept of the mess she is making, but it is still not as bad as some have it. Mom looks good; she is always concerned with what she wears and works so hard to match colors she can no longer recognize. She worries about looking good over almost everything else. And to the point that she spends hours upon hours (I am not exaggerating) putting on her make up, especially those dang eyebrows (which she now draws on her forehead, thinking since her eyebrows are white and sparse, she can put them where she thinks they should go. I am not making this up. She told me this herself!!). She is present and trying. The sad part is that she has no idea how she is presenting herself, and I know if she did not have this disease, she would be mortified.

And now we are preparing for her inevitable end. And I keep thinking, “It’s not that bad. She is still walking around, talking, eating. Really? Are they sure?” And then I really look and the decline is so viewable. She is not making sense of things. She is disjointed and her conversations nonsensical. She is comfortable sleeping in her jammies all day on the couch. She has no urges to get off that couch, or out of her particular space on it! I cracked up, when she decided to get dressed for dinner the other day, as I was plating the food and setting it down. I had to go find her and tell her dinner was ready. She was so upset she was still in PJs but then when I told her it was just the three of us (my hubby, mom, and me) she relaxed with, “Well, so long as no one is dropping by.” It was after 6pm. LOL.

And as she bangs into the wall, or wears more of her food than she eats, or laughs at horrible photos of earthquakes in Indonesia, I realize that I am here. My home has become a nursing home and mission field, all combined into caring for my mom. I am here for her, helping her through these last stages. I am blessed to have my mom trust me to be there for her. She still hugs my neck at night and tells me she could not do this without me, and then says, “God bless you.” And most nights, it makes me smile, and occasionally brings me to tears. Because one night very soon, it will be the last time she ever does that.

 

Here I am Lord by Dan Schutte

I, the Lord of sea and sky,
I have heard My people cry.
All who dwell in dark and sin,
My hand will save.
I who made the stars of night,
I will make their darkness bright.
Who will bear My light to them?
Whom shall I send?

Here I am Lord,
Is it I Lord?
I have heard You calling in the night.
I will go Lord, if You lead me.
I will hold Your people in my heart.

I, the Lord of snow and rain,
I have born my peoples pain.
I have wept for love of them,
They turn away.
I will break their hearts of stone,
Give them hearts for love alone.
I will speak My word to them,
Whom shall I send?

Here I am Lord, Is it I Lord?
I have heard You calling in the night.
I will go Lord, if You lead me.
I will hold Your people in my heart.

I, the Lord of wind and flame,
I will tend the poor and lame.
I will set a feast for them,
My hand will save.
Finest bread I will provide,
Till their hearts be satisfied.
I will give My life to them,
Whom shall I send?

Here I am Lord, Is it I Lord?
I have heard You calling in the night.
I will go Lord, if You lead me.
I will hold Your people in my heart.

2 thoughts on ““Here I am, Lord. Is it I Lord ?”

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