Caught Between Two Loves: Being A Special Needs Parent When Your Own Parent Is Dying

Life doesn’t stop when you have a special needs child. If you have become not only a caregiver to your child with special needs but also to your ailing parent at the same time, I want you to know that you are not alone.

My son, Kai, and my mother; two of the great joys of my life. My loves. They were only with me at the same time for two years but they were two of the most turbulent years of my life. My mother had Alzheimer’s disease and Kai was diagnosed with disabilities at the same time.

Well, not quite. My mother was diagnosed about two years before Kai was born. Actually, right around the time that my daughter was born. But she chose to hide it from me.

My mother had begun to act strangely. In 2010, not too long after my daughter was born, I asked her to go get checked for Alzheimer’s disease. She just didn’t seem right to me. I wanted to be with her, but we lived in Texas and she lived in Las Vegas and with a new baby, and a job, I just felt that I couldn’t be there.

So, when my mother found out that she did, indeed, have Alzheimer’s disease, she decided that I didn’t need to know about it. She was protecting me. We were not only mother and daughter but best friends. And I had just had my first baby, a late in life event that I had wanted for years. I think that she didn’t want to ruin it for me. So she didn’t tell me. It makes me cry to think of her, knowing, and not having my support. I could have gone to her. I would have been there. But all the could haves, would haves and should haves don’t make any difference when all is said and done. I didn’t know. I didn’t go.

She continued to act strangely. When my daughter was a year and a half old and I was pregnant with my son, Kai, she decided, for the first time in years, that she wasn’t coming to be with us for Thanksgiving. I was astonished. Her granddaughter was her pride and joy and she wasn’t coming to see her? But what was even more astonishing was the reason that she gave.

My mother, who had attended Harvard and Columbia University and had a doctorate in psychology, told me that the reason why she wasn’t coming was because she had entered the Publisher’s Clearinghouse Sweepstakes. If she wasn’t home and they came to her door, she wouldn’t win. So she had to be there.

I was still in the dark about the diagnosis and, of course, this was shocking. She wasn’t joking. She didn’t come. Thanksgiving went by, there were a few more weird interactions and I was now hugely pregnant with my Kai. I remember looking at our Christmas tree lights in the middle of the night, unable to sleep, worrying. I was upset all the time. I asked all of my inner circle people what they thought I should do and no one had any idea. Finally, between Christmas and New Year’s, up at 2 AM worrying like crazy, I decided that the one person I hadn’t asked was her. If she didn’t have Alzheimer’s disease, what was going on? Did she know? How should I handle this?

I called her and asked her what I was supposed to do. She finally admitted, in a huff, that OF COURSE, she had Alzheimer’s disease. I was stunned. I asked when she found out and she told me June. I should have asked what year. I didn’t find out until after she died that she had known for two years.

She was protecting me. And, now that I knew, I had to protect her. So I told her that I would take care of her. I asked her to move to Texas. She said no. Her friends and life were in Las Vegas. After talking with my husband, we decided that, well, we would just have to move to Las Vegas to be with her.

My beautiful son was born with no complications, seemingly perfect. I was on maternity leave for three months (with no pay) and went to Las Vegas with the baby to visit my mother, to just be with her and make a plan.

My mother had a small, two bedroom, two bathroom home in a retirement community up on a hill with a beautiful view of Las Vegas. It was maybe 1200 square feet. I had a husband, five kids (I married a man who had custody of his three kids, a totally different post for another day), a son-in-law, a new baby grandson, all of our stuff and a couple of pets. It wasn’t going to work. EVERYONE was moving to Las Vegas.

We decided that my Mom would start packing and I would return to Texas to finish my last 2 weeks of teaching after maternity leave. We would pack up in Texas and put the house up for sale and move into my Mom’s small home. ALL OF US. And start looking for a house.

The journey involves three moving trucks, a rainstorm and more, but again, it’s a post for another day.

When we all finally got to Vegas (my son still seemingly perfect and four months old), my mother had packed not a single box. She seemed unable to remember how to start such a project. After looking at many homes and on our second realtor, we found a 3200 square foot home in Las Vegas. And ten of us moved in.

I got a teaching job. My husband stayed home with my mother and our very young children. My husband was an absolute angel. He took my mother to every doctor’s appointment, managed her medicine, comforted her. He took my daughter to daycare. He cared for my son. And it was my husband who was at the doctor’s office with my son when he found out that my son was not meeting his milestones.

Mom Gets Worse, Kai Gets Diagnosed

My mother was starting to forget how to do things. My husband would hand her her medicine and instead of swallowing it with her glass of water, she would plop the pills into the water. She forgot how to use a fork. She tried to make herself eggs and turned on the wrong burner, her pajama sleeve moving through the fire (we had a gas stove) as I raced across the room to turn it off. We removed the knobs on the stove top. She started to elope, leaving the house in the middle of the night. We had to lock the front door so that it only opened from the inside with a key. And, all the while, she didn’t want anyone outside the house to know (except one friend) about her diagnosis. This was impossible to keep secret. She was starting to be unable to clearly express her thoughts. When we would be out and about, at the bank, the hairdresser, it was increasingly evident to others that something was off. I began to sneak behind her back, to explain to people we dealt with on a weekly basis what was happening. I would try to make her experience seem normal to her. People were suddenly extra patient and understanding and it didn’t occur to her to ask why. Then, one day, we were getting in the car and I was putting her seat belt on her. She could no longer do it herself. As I reached across her, she leaned over and bit me on the arm. Then she laughed. My mother had always had an amazing sense of humor and loved to joke around. In her illness, she was still expressing her humor. It just came out twisted.

I cried. A lot. I am crying as I type this. It was so hard.

My husband was becoming increasingly more stressed. He was home, 24/7 with my Mom. And my son. Who wasn’t walking. Kai wasn’t sitting up. He wasn’t rolling over. He was falling further behind at every doctor’s visit. The doctor suspected that Kai was autistic and referred us to ECI (Early Childhood Intervention).

At ECI, there was another doctor who examined Kai. There were specialists who did developmental play testing. Physical therapists. Occupational therapists. Speech therapists. And so much more. They were wonderful.

Also, around this time, I became the go-to general education teacher to sit in on all of the ARDs at the school I was working at for special education pre-K. They were happening almost weekly. I had little experience in special ed (just one or two students over the years) but lots of experience in general education. This was an eye opening experience for me. Although I had no idea what was about to happen, I got to see firsthand what lay ahead for myself, Kai and our family, when Kai entered public school. I became well versed in the structure of the meeting, sitting through a seemingly endless amount of them. Who knew how much I would need this experience?

After an MRI, Kai was diagnosed with PVL (periventricular leukomalacia), which is damaged white brain tissue. Unlike autism, you can see PVL right up there on the screen when looking at the MRI results. There are about 8-10 different situations that can cause PVL including being a preemie, drug or alcohol use by the mother, lack of oxygen to the brain in utero and lots, lots more. There was no evidence, in our case, of ANY of these situations. Kai has PVL. It is anyone’s guess as to why. Much later on we discovered that Kai also has duplicate Chromosome 16. And autism. And sensory processing disorder. He is developmentally delayed in all areas. But he can learn and he does.

I am, on some level, really glad that at this point I only knew about the PVL. I wonder if I could have handled knowing the full scope of the situation.

ECI started sending therapists to the house for in home therapy. My son was now having up to ten sessions a week in speech, PT, OT and feeding. He was choking on pureed foods at every meal. This scared my husband so much that he wouldn’t give Kai these foods until I was home. It freaked him out. For some reason, I was able to stay calm and got really, really good at the hook method to intervene so Kai could get his air passage open again. We did this every single day for an entire year.

Kai started to improve. At 22 months old he finally started to walk. As is his way, he took a couple of steps for the first time one day and the next day he was walking all over the house. He tends to accomplish things in bursts, we would discover later.

But my mother was getting worse.

She kept reaching out and grabbing my children’s bottoms to check if their diapers were full, then forgetting and grabbing them again, repeatedly. Kai brushed her off but my daughter, who was late to potty train but finally getting out of diapers, complained. Then one night my adult son came up to my bedroom to tell me that my mother was face down on the carpet no pants on, and stuck there. It was 1 am. I was supposed to teach the next day. I got up and went downstairs to help her.

Helping her was no mean feat. I got her up and into the bathroom. I discovered that she was stuck halfway through a bowel movement and that she couldn’t pass it. She screamed at me the entire time, asking me why was I doing this to her? She fell off the toilet. She fought me. And I manually had to help her pass her bowel movement. She calmed after this. I got her cleaned up, changed and tucked her into bed. Then I sat on the couch in the darkened living room and I cried.

After a week long hospitalization for more of the same I discovered that my mother had been hiding and eating a bar of artisanal soap. She thought it was candy. She had gnawed her way through half of the bar.

My son was still choking at every meal. I was still working full time. My husband was still a 24/7 caregiver. And the pressure seemed like it would never end.

My mother started running through the house from one piece of furniture to the other. It seemed as though she were trying to outrun her disease. She forgot who I was. My whole life she had called me by my middle name. Then that was over. She began to call me by my first name like everyone else did. Because she forgot who I was, her daughter, her best friend. However, and I smile to think about it, she never forgot who my husband was. He called her Mom. And often she would express her affection for him, saying things like, “I like you. You’re crunchy.”

When we couldn’t get my mother to stop running, I would sometimes climb on top of her and pin her down just so that she, and everyone else, could get a break.

And then my mother stopped eating and drinking. We had in home respite care coming in at this point because my husband was about to implode with stress. But they couldn’t keep up with her. They were used to patients who just stayed in bed. After the third or fourth day I tried to force my mother to drink and she fought me tooth and nail. It got to the point where we had to take her back to the hospital, where we had just spent the week from the soap eating incident. But she wouldn’t leave. It took four adults to carry her, feet first to the car. She fought the whole way. She would never return to the house. Our older kids watched the younger ones. The two oldest were adults by this point and knew how to take care of Kai.

My husband drove and I sat in the front seat trying to keep it together. He got out of the car at the emergency room and went in to ask for assistance because there was no way we could get her out and into the hospital ourselves. My mother and I were alone. I turned around and looked at her and said, “Mom, here’s the thing. We are at the hospital. But you have a DNR. If you keep refusing to eat and drink, you’re going to die. What do you want to do?” It seemed as though the clouds cleared away from her brain in that moment. Her eyes were the clearest they had been in months.

She looked straight into my eyes and said, “I want to die.”

I said, “OK, Mom. OK.”

The hospital staff came and got her out of the car. She was put in a wheelchair. She screamed the entire time. And we went into the ER. At some point, between them trying to insert an I.V. and a catheter, I decided that she had had enough. She had already told me that she was done. I listened to her pain and decided, no more. I asked the hospital how this would be handled and they recommended that we go to hospice, where my mother could be medicated to feel no pain and pass with some dignity. So I made the very difficult decision that I would help her do what she wanted to do. She didn’t want to go any further. She didn’t have other options. It wasn’t going to get any better.

It took five days. My mother, my best friend, my lifelong champion, passed away. On her terms.

And I helped her do it.

It is sometimes hard to live with.

We were now in a town we had no reason to be in. We lived in a house that we didn’t need. My husband and I were exhausted and we just wanted to go home.

It took months. We finally sold the house, and were moving back to Texas. In the middle of the drive there, the house we had lined up to live in fell through. We were then homeless. It’s another story for another day.

Whatever is happening in your life, I want you to know that you are not alone. There are others out there who are going through it too. Reach out. Ask for help. Ask for respite. And don’t forget, that everything changes over time. I felt locked into my situation. It felt like it was forever. My marriage was stressed beyond belief. My son’s diagnosis, along with my mother’s, was almost more than I could bear. But I got through it and you can too.

I couldn’t have gotten through it without help. My husband was my partner in this. The community needed to know, so that when I took my mother out in public, they could help care for her too. Everyone, from her hairdresser to the people who worked at her local bank branch to the local fast food place, knew the deal. The neighbors knew to look out for her if she eloped.

The same can and should be put into place for your child with special needs. It is said that it takes a village to raise a typical child. But when it comes to raising special needs children, we tend to close ourselves off. We tend to think that we can’t reach out because people won’t understand it like we do. And you’re right. They won’t. But they can still help.

Let people help.

You can do this. Take a deep breath. It isn’t forever. It IS hard. But you will come out on the other side.