When Gabi was first diagnosed with progressive dementia, after a month of crying, I had an idea. This is my spiritual path. This is my opportunity to develop loving kindness and compassion. And by putting his wellbeing first, perhaps my ego would shrink just a bit.
I was ready to devote myself solely to working and taking care of him. And I felt uplifted spiritually.
But I also knew that I was not strong enough for this task. Not physically or emotionally. So I returned to psychotherapy and began chiropractic treatment. That was four years ago, and to my surprise I am still doing both.
I am happy to take care of him. At first it was just cooking for him and taking him to the doctor. That grew into understanding what he wants without the exact words, being attentive to his movements so he doesn’t hurt himself, giving him his toothbrush so he brushes his teeth, telling him it is time to shower, and remembering to give him his diaper when he goes to bed.
But we were fortunate. Typically when someone is diagnosed with dementia, they become aggressive, even dangerous to themselves and others. Gabriel was somewhat aggressive and anxious with others in the very beginning, mostly when it came to trying to get his pension, because he didn’t understand why he didn’t have it anymore.
Being somewhat aggressive, or let’s say insistent, was typical of him before his diagnosis. What I understand now is that he had been doing things for a long time that were too much for his brain to process.
When the doctors told him to stop working and stop driving, he happily said okay. He completely let go. It seemed as though he was relieved.
Since then, he always says “Whatever you want” and “Whatever you say.” This is partly because of the dementia itself. Apathy is one of the symptoms. But partly because his essence has always been to want others to be happy. And it still is.
Gabi developed his own routine, early in the disease he would wake up at 9am, we would have breakfast at 9:30am, then he cleaned the floor and washed the dishes, then a nap at 1pm, our main meal at 3pm, washing the dishes again, then playing the guitar, resting until 8pm on the dot, when it was time for the evening snack. Then he would wash more of the dishes and go to sleep at 10pm.
And of course in so doing, he developed my routine too. When he was washing the dishes, sleeping and playing the guitar was when I would work. And the next day we would do that again, and again.
When the country started to open back up after the pandemic, I began to look for activities that he could do. Lovely Yare, a 27-year-old friend and Nalandabodhi member, began to come weekly to do cognitive activities with him. And on Fridays I took him to his cognitive therapy in person with his psychologist. We also started going to a jarana class, where everyone greeted him with kindness and as part of the community, no matter how well he could play or follow the instructions, which was quite well when we first started going,
But as his cognitive deficits increased, our world began to shrink. The jarana group was the first loss. He told me he didn’t understand the instructions or the teacher’s talks and refused to go anymore.
The next loss was the Friday therapy with his psychologist. When he started on Mondays to angrily say he didn’t want to go on Friday, and stressed all week about going, it seemed it was time to stop. My view has been that his quality of life would be better not by delaying the inevitable for a few or several more months but by being peaceful and content. And when we stopped going, he was both.
As his vocabulary and understanding decreased, our conversations became limited to “How did you sleep?” and “How do you feel?” When he meets new people he still wants to converse. Afterall, he was a journalist, and was very good at asking questions for his articles. His only question now is “How old are you?” And when he feels comfortable with someone he will most certainly ask.
He has days when he can say more than that. In fact, he had a morning last week when he could say quite a bit. And what he said was, “Don’t take care of me anymore. Send me away. You are 62 years old. You need more, and I can’t give it to you.”
His essence came through yet again, to want everyone to be happy, including me. It reminded me of what he told me a long time ago, before he got sick, when we were watching a movie about a man who had multiple sclerosis and was physically quite limited. His wife was his caregiver. In the middle of the movie he turned to me and said, I don’t want that. Don’t do that. I don’t want to be a burden on my family.
But I had in mind that I would take care of him until I physically was not able, the point at which he would need help bathing, dressing himself and changing his diapers.
We’re not there yet. And yet he is going into a nursing home. Why?
I thought that it was enough for me to work and care for him. And I didn’t think it mattered that my world had become so small. But I was becoming more and more lonely. And depressed. And when his own doctors told me that I mattered too, and they didn’t think I was well, and I have needs to connect with people and I need to get those needs met, I accepted that it was time. When I think about the past few years, it feels as though I had begun to die with him.
As it turns out, this small world is not good for him either. Living with a group of other people and doing group activities will help him too.
Caregiving is tricky. Especially as a Buddhist. I thought putting others first was a good practice for the ego. I thought that dedicating myself to him and my work was a spiritual path. And actually, it was. I feel that compassion and love and tenderness has grown in me.
But there is a glitch. As both doctors and dharma teachers say, put on your own oxygen mask before you put on your child’s mask. If you pass out, you won’t be able to help the more vulnerable person that is sitting at your side.
Caregiver burnout is serious. It can cause physical and psychological illness. As caregivers, we have to know when to ask for help. That’s not my strong point, as my mother would tell you. “I can do it myself” was my phrase as I was growing up.
I didn’t realize I was burning out, and didn’t think it mattered that much that I was lonely. But the loneliness has begun to consume me. That became clear when I went to our yearly Nitartha Summer Institute program as part of my work. The first morning, a colleague and friend was going to the grocery store and asked if anyone need anything. I asked for some apples. When he brought them back I asked how much I owed him and he said, in such a kind and tender way, don’t worry about it, that he could afford to buy me some apples.
I started crying. Uncontrollably. I walked away from the others and cried my heart out. I wanted to scream, but instead I held my breath. What happened in that moment? Someone did something for me. It was then that I realized I had gone too far.
When is it time to ask for help? When is it time to take a break? When is it time to stop and turn your loved one over to be taken care of by someone else?
These are difficult questions. But questions that we as caregivers need to ask over and over. We need to be aware of how we are. Before we get too sick to be able to care for others.
The answers will certainly depend on each situation and each person. I know people who have continued to take care of their partners with dementia when their partner’s anger put them both in danger. That seems like an obvious time to take someone to a nursing home. But even they resist that.
It’s hard for me to see this need. Gabi is so docile, kind and content. It seems so easy to take care of him. But I have learned that we all need social connections. Without that, serious mental health conditions can develop.
It turns out that caregivers also need to participate in group activities. And at some point, we need to start living again. When it’s not healthy for either one or the other, it’s time for a change.
There is a lot of loss and guilt at this stage in the process. And that’s not easy. So even at this stage, we need to ask for help.
I am fortunate to have four professionals and friends in my life. Their help is crucial, even and especially now. I am getting better at asking for help. But I waited too long.
If you are a caregiver, please don’t wait to ask for help. It sounds so cliché but it is so true, put on your oxygen mask first.
With love and heartfelt appreciation for all those who are supporting us through this process,
Ellen (Elena)
Videos by Dementia Expert Teepa Snow
The Early Signs of Dementia
What is Dementia?
Determining Dementia
The Limbic System’s Role in Dementia
The specific name for what Gabi has is Semantic Variant Primary Progressive Aphasia. It is a type of frontotemporal dementia (FTD).
Gabi is entering the 6th of 7 stages. Here are what some experts define as the 7 stages of frontal temporal dementia.
Caregiving Strategies
Here are some strategies that I have learned:
- When he gets anxious and aggressive, stay calm and compassionate.
- Don’t ever say “Don’t you remember?”
- Use photos in cases like Gabi’s when words are not understood.
- Use a calendar to keep your loved one oriented in time.
- I put photos of people who are coming to visit on the day on the calendar that they will be visiting.
- Know your loved one’s capabilities well enough to not push them to do things they can’t do. For example, to remember your name. That creates stress, which is not helpful for dementia.
- At the same time don’t underestimate your loved one’s capabilities. Find the line between encouraging them to do things that might be difficult and stressing them out by asking them to do things that they cannot do.
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