Feeling Low: Rambling Post

LilMagill

Feeling Low: Rambling Post

LilMagill
cloud-368111_640So many things on my mind lately.

I’ve been feeling a little depressed the past few days, but not for any particular reason. Just being aware of Mom’s decline and seeing my responsibilities and stress increase and my freedom fade away. Today I’m pre-grieving my career. It’s not a big career (I'm an adjunct English teacher at a local technical college), it certainly doesn’t pay much, but I'm proud of it and I love it. It makes me feel good about myself and feel like myself. It keeps me mentally and socially active and I love the people I've gotten to know there - both colleagues and students. Being a teacher is who I am. Being a caregiver is not. I feel like I’m too young (48) to give it up. But it’s a stressful and demanding job at times. Even though it’s just part time, there are weeks when I have to grade papers that require full days of work and concentration. If Mom needs me more, I don’t know if I can manage both sets of responsibilities. Even if I pay someone to stay with her while I go to work and grade papers, I’ll always have to know in advance exactly how much time I’ll need, and sometimes I don’t. Failing my students is an awful thought. So, of course, is failing my mother.

The 24-hour caregiving so many people do just sounds impossible to me. I don’t want that. I can’t do or be that. But I love my mother and I owe her care. How can I possibly take care of all of her needs and mine too? But how can I be a good daughter if I don’t take care of her? I read about people collapsing from exhaustion or becoming sick because they couldn’t take care of their own health – and how can you if another person is totally dependent on you and your flexibility depends entirely on a paid caregiver’s availability? And what about money? Will there be enough money?

I read this article that is going around on Facebook by a doctor who has decided he wants to die at 75. Not exactly that. He decided that from age 75, he wants no medical intervention. No more life-extending treatment, just palliative care. He talked about how medical science has not extended life so much as extended death. We take ten years to die now, and it’s a hardship – not just for the aging/dying person who spends a lot of that time suffering, but for their family members. Children, he argues, deserve to have a time to live out from under their parents’ shadow, and to have their own old age unburdened by caregiving. And he says that he wants to control how his children remember him – as a living, vital man who can still participate in their lives and communicate fully. He doesn’t want them remembering him as incapacitated, confused, unable to converse, etc. All of that resonated with me. I read stories here and elsewhere about the great lengths families go to to keep their loved ones alive even when they are severely demented or completely incapacitated and in pain. Of course family members do this. I have no doubt I will do this for my mother. Most of us, I imagine, love our parents and what else is there to do? How could we do anything but our best for loved ones, no matter what their condition? There is no model for any alternative. But I love the idea for myself – it fills me with hope. I’d like to live as long as I can live well – as long as I can be myself, have reciprocal relationships with other people, and enjoy some simple pleasures – food, books, good conversation, etc. But I’d like to enter a phase of palliation – is that a word? A time when I accept whatever my body will do and treat only pain or discomfort. As he said, it might be a virus or bacteria – a bout of the flu. It would be over quickly. But would family members accept this? What about medical professionals? If I had a signed, notarized document, a living will prohibiting any kind of life-extending treatment especially if I have dementia, would it be respected? Would I have the courage not to change my mind? I can't say for sure that I would.

Here's the article if anyone is interested.

I see how difficult even the early stage of dementia is for my mom. She is still explaining it to herself as age-related memory loss, but she talks about how hard it is not to be able to remember things and not to be able to think clearly. That is so frightening to me. Frightening to see it happen to her, and even more to think of it happening to me. It would ruin the lives of everyone who had to deal with me. For my mom, right now it just creates a lot more little problems – she worries about things and keeps worrying about them over and over even though I tell her the answer to her question. She doesn’t remember if she reimbursed me for the hotel room at the funeral, she doesn’t understand why the web page is on the computer screen, she can’t find her watch, she can’t remember what it is she needs at the store, etc. Every day I check in with her repeatedly to see what problems I need to solve. With her, I swear, 98% of the time I am sweet and patient even if I'm not feeling it. I never want her to feel like she's upset me.  I'm just venting my dark thoughts here.

She is being really good about letting me do almost all of the driving now, but that’s hard for me. Even though I only teach two days a week and schedule all of her things on my off-days, I have a conflict coming up. There’s a staff development on one of my off-days that a good friend is doing that I really want to go – not just because I care about the topic, but because I want to support that friend/colleague. However, it conflicts with the small group my mom and I are in together at church. She has said, “I’ll just go by myself and pick up the handouts for you.” But I am too afraid for her to do it. I would feel so guilty if anything happened. In her mind she is still fine to drive, but she lets me drive her to all the doctors (neurologist, nephrologist, internist, dentist, optician, retinal specialist) now so I can be an extra pair of ears. Before her leg injury, I was only driving occasionally, but now I've officially taken that over. I don't know if I can find her a ride she will accept or if I have to give up the staff development. Since she doesn't perceive a problem with herself, she won't accept help from others. The other day she was saying that the three of us (my husband, son, and me) should go visit our friend in another state for a weekend (she is going through some stuff. . . ). But I’m afraid to leave her alone and she doesn’t believe she needs anyone to stay with her. Maybe at this point, she would be okay. She is still herself. She forgets a lot, but she still lives her life, follows her routines with little to no assistance. Except for all the little things. . .

Jan said something in the podcast about staying in front of the big thing - how did she put it? Staying ahead of the crises. Stopping the driving before there's an accident, providing the supervision before it becomes absolutely necessary. But she is still too much herself for me to treat her like a child and make all the executive decisions. I need her to be on board. It's not just about her being happy with me - although not having that is really painful to me - but without her willingness I just don't know how to make things happen if she objects.

I am in a bad mood lately.

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Jenn

oh, P.S. I have a living will that says that if I am diagnosed with cancer.............etc. I will not receive treatment, only palliative care as well. I don't want to live being bed bound, incoherent, a vegetable or suffering. I don't want to be a burden. If I am not a valuable, interactive part of a family or community, I would rather pass on and go to my real home...........

Denise

Hi LM--I just wanted to echo what Jan said--your musings are important because what's happening right now is incredibly significant. It's difficult and sad and, honestly, sometimes just awful to figure this out. It all calls for a bad mood.\r\n\r\nPlease keep us posted as you work through the thoughts and worries.

Jenn

LilMagill! I love you! I share so many of your experiences and concerns! Contact me if you want to be phone buddies! I left my job; my career. My Mom is in decline........dementia............it is 24/7. It is hard, but I know there is a light at the end of the tunnel.. I could have written this post myself. I believe we need to just vent, voice..........rambling or not! Our feelings are valid. This is a tough journey to care for our beloved parent! It is worth it, but it is difficult. I have no wisdom or fix-its, I am just feeling my way in the dark sometimes, but my Mom is important....withering and demented or not. Your Mom is important and worth it too!

jan

You are in a very important mood! And it may be dark but it isn't \"bad\". Allowing yourself to be honest about what you want and need is significant. I struggled for about a year with the issues of providing dignity and independence with my mother. Everything we did at the beginning was about persuading and convincing. Try to look at the situations from her point of view and sell it to her like an advertising agency sells a product. How would such-and-such benefit her? \r\nYou have alot more on your plate than I ever did. I was not reluctant to leave my job, and my work had little to do with my identity. I admire you for the straightforward way you are approaching your situation.\r\nI'm not sure if you are in menopause or not. But when I finished menopause and had no estrogen left circulating in my brain, I felt a considerable LOSS OF BRAIN FUNCTION. It really scared me at first. But either I got used to it in time or it slowed down. I can imagine dementia must be something like that.