Six months. Wow. Has it really been that long since I last posted anything? I can’t even wrap my mind around how quickly the time has gone by. My apologies to anyone who was waiting for me to post more about dye-free restaurants, etc. I started many drafts, but never finished. My life of late has been majorly sidetracked. I’ve decided it’s worthwhile to write about it, as I’m sure there are others out there who find themselves in similar circumstances. Perhaps this can be encouraging, or at least empathizing.
My mother has dementia. In a few months she’ll be 58. Her mental capabilities have been slowly, steadily declining over the last 12 years. Over the last six years she has had more significant and obvious memory loss. About three years ago I began noticing her struggling physically as well. She can no longer open the car door or turn on a faucet. She can’t change her clothes on her own, and she can barely use a fork. Either she doesn’t remember how, or her body is simply failing to complete the tasks her brain is telling it to do – I am not sure which. It is endlessly frustrating for her, and it is heartbreaking to watch.
“Heartbreaking” doesn’t seem to quite encompass everything. But I don’t know what other word to use to describe the immense discouragement and sadness and despair I have experienced. Being unable to stop a once vibrant person from fading away does feel like it breaks something inside of you. Maybe heartbreaking is the best way to describe it…
The heartbreak was served with an unexpected side of envy; maybe a touch of bitterness too. Most of my friends are in the same life stage as I am: the house-full-of-littles stage. There are days when just surviving the day with all of them is all you can accomplish. I think any other mom can attest to that. I’ve found it’s terribly painful for me when I hear about my friends’ moms helping them. My kids will never have “Grandma Days”. I will never have Mother-Daughter Fun Days. I don’t get free babysitting, or have anyone bringing me chicken noodle soup and kleenex when I’m sick. It’s challenging to not feel jealous, to not want what my friends have. I’m not idealizing that they have a perfect relationship with their moms, I’m sure having your mom around a lot can come with its own difficulties. I would just like to know what that’s like. It seems nice.
In a lot of ways, these feelings I have about my mother are probably similar to what someone would feel if they were grieving for a parent who had passed away. The more I have let myself feel those things and process through those emotions, the easier it has gotten to live with it. Maybe I’ve finally hit the acceptance stage. The mother I once had is no longer here. That person has passed. That’s reality. It’s not the reality I want, but it is what it is.
Now back to my current reality…
I’ve known for a while now that she has needed more assistance. However, family members are not always on the same page, and those can be some weird and uncomfortable waters to navigate. Some people were/are in denial of just how bad her current situation is. One of those people happens to be her husband, my stepfather. This makes getting anything done (without going to court, which I’m still hoping to avoid) extremely difficult. The last six months of my life have been spent trying to convince him she needs help. And when he denies it, to offer my own help in lieu of professional help.
I am not able to help my mother as often or as extensively as I wish I could. I have felt very guilty about that. I have done as much as I can, while trying to maintain my own family as my top priority. I have to regularly remind myself that I should not feel badly for putting my husband and our three children before her. They are my primary obligation in life. But little kids are pretty good at sucking up time and energy. I find myself wishing she had reached this stage before we had babies, because then I might actually be useful. As things are now, I feel like I’m just sticking a bandaids on a gaping wound; knowing it’s really not making a lasting difference, but thinking it’s better than nothing.
I used to have her over to my house a lot. Since she couldn’t hold a job with her memory issues, she would just come hang out with me and the kids. And when she stopped being able to drive herself, I would pick her up for the day. Having her here became increasingly difficult to manage. She gets paranoid and disoriented, and I started questioning whether it was good for the kids to be around her so much. She would try to pick up the baby, not really remembering how, and nearly drop him. She would grab one of the older boys as he was running by, squeeze his arm hard, and stutter through a scolding for running and yelling (i.e. being a normal little boy). It was confusing and saddening for the kids.
She also started needing a lot of physical help with everyday things, like walking up stairs and using the bathroom. It was tricky for me to help her with all those things and still watch the boys, particularly the one year old who loves getting into everything the second my back is turned. I started picking her up less and less, because the thought of having to watch her was overwhelming. I fell into a guilt spiral over that. I was minorly depressed. It all felt just too sad and hopeless. I felt like a worthless daughter.
In an effort to assuage my guilt, I dug deeper into studying dementia. I had started researching early onset dementia causes years ago. There are a lot of intriguing ideas out there. The one that stuck out to me the most was nutrition. So many studies have shown a strong link between poor nutrition and dementia. A lot of the chemicals in our food damage the thyroid and cause major hormone imbalances. A malfunctioning thyroid alone can cause the same symptoms as dementia. Combine that with low levels of vitamin B12 or iodine, or not getting enough good fats or not drinking enough water – well, that could just be a recipe for disaster.
I started feeding my mother a special diet based on what I’d read. Lots of avocados, eggs, almonds, greek yogurt, fruits and vegetables, vitamins, supplements, and as much water as I could get her to drink. She got better. Yes, you read that right. She was getting better! Keep in mind, I was only having her over 3-4 days a week. But after the first week she was markedly better at communicating. She had gotten to the point where she could only stutter out a few words at a time and gesture to get you to guess the rest. It was as if she knew what she wanted to say, but her mouth wouldn’t cooperate. By the end of that first week, she could speak a full sentence again. After the second week she started reading random words around the house; she hadn’t been able to read anything for well over a year. I was convinced nutrition was the key.
It was a simultaneously encouraging and depressing discovery for me. I had finally found something that helped her, something that could potentially “cure” her as much as she could still be cured. BUT I couldn’t feed her every meal or even have her come over every day. The diet changes wouldn’t matter unless they could be enforced consistently. I kept doing what I could, and she kept getting slightly better.
My husband and I finally had a mini-intervention with my stepfather, and at least halfway convinced him that she needed daily professional assistance. Last month we were able to get my mother signed up for an adult day center. She is a major extrovert, and LOVES that she gets to be around people all day. No more sitting at home alone staring at the TV all day. She also gets more consistent nutrition. The food is not quite at the level of what I had been giving her, but it IS every day.
This was a huge weight lifted off my shoulders. I know this day center is not the full or final solution. In spite of the ongoing saga, I’ve been given a little breathing room. I can take time to do some of the things I want to do, and not feel selfish. Like writing here. I enjoy this, and I have missed it. Here’s to hoping it will not be another six months before I write again. 🙂