gettin’ old: the bad news follow-up

Thanks to everyone who had good ideas about what to do for my folks that are getting up there in years. It turns out that there are lots and lots of resources just like the ones I was looking for: agencies that screen, train, and bond workers to help seniors out and allow them to stay in their homes longer. My folks are lucky that they live in a densely populated area, with lots of resources. Here are a couple links for folks in the San Mateo County, and here is a starting place to find care throughout California. It turns out they have just what I thought my folks needed: someone to check in, have a chat, maybe tidy up the dishes, drive them around to do errands and grocery shopping, remind them to take meds, and keep loved ones posted on how things are going. Weekly visits would be about $500/month, as far as I can tell without making any calls.

Unfortunately, we might be needing more than this level of care, as my mom was just diagnosed with Alzheimer’s. I hate to even write this and be public about it, for all sorts of reasons: 1) it seems like a sympathy beg, which wounds my pride, 2) maybe it’s too personal, and 3) it’s too serious–how can I post a funny or snarky post after this? Oh my god, her mother has Alzheimer’s and she’s writing about dog farts? She is a monster!

Nevertheless, this terrible diagnosis means (among so many other things I am not even able to contemplate just yet) that I have a new role to fill: the well-intentioned-yet-too-far-away daughter, who can only provide the most insufficient support to my sister and dad, who are in the trenches. The situation in my family is so cliché: the upwardly mobile daughter who moves away, the working-class daughter who is stuck close to home, working two jobs, and now has to take on a caregiver role. The resentment, the guilt. While my sister is waiting tables, I sit in my armchair and write this post. Yesterday, on the phone, my sister asked me to move back there and help her out. I won’t. I do feel like a monster.

And then, when I talked to my mom on the phone, I realized that she is not much different from the last time we talked. She is stressed out that she can’t remember things, embarrassed that she is “stupid,” and totally unaware that she has just been diagnosed with Alzheimer’s. Although she may need to move into a care facility sometime, it’s probably not now. I have a lot more research to do, and I suppose this is one of the only ways I can support my sister. Hopefully, she’ll want to hear about what I find out. Most times, the class difference between my family and me gets framed as my being a know-it-all, so maybe my finding out more stuff won’t be as helpful as I imagine.

8 thoughts on “gettin’ old: the bad news follow-up”

  1. Hi, Tina, my sympathy on coping with everything. These are hard issues and hard feelings to deal with. As it evolves, you can perhaps get help thinking of ways to help make your sister feel supported without giving up everything for yourself.

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  2. My own mother was in a similar situation to you. Her mother had Alzheimer’s. My mom lived in New England and was upwardly mobile, her siblings all remained “home” in Ireland with their parents and were not nearly as well off as she. Her parents had no money of her own. What did she do? For years she spent every “vacation” with her mother. She told her siblings to leave and take some time away while she did periods of intense caring. She did the kinds of things that you could do when spending a long period of time with someone without ALSO trying to live your life: cleaning the house from top to bottom. Taking care of chores that had piled up, appointments that my grandmother needed to attend but hadn’t. She bought things that needed to be bought, fixed things that needed to be fixed, etc.

    And this created problems. While her siblings appreciated the work she did for a couple weeks about four times a year, they also got bitter. Bitter that her “arrivals” suggested that they had not been doing a good enough job taking care of their mother. Bitter that my mom was absent most of the time and got to swoop in and be the hero for a couple weeks only to leave and let her siblings do the hard, mundane work of daily care. Bitter that they didn’t really get to see their sister when she arrived, because she was constantly working. Just bitter at the whole situation.

    It also created problems with my mom. She got upset that every time she went home to “visit” her mom she didn’t really visit her but instead worked constantly. She would comment that she didn’t see her that much. It created problems in my mom’s relationship with my father. Being away consistently for long periods of time was tough. It created problems with my mom’s relationship with me and my brother. We complained about her absence and complained that every vacation we took was always to the west coast of Ireland for 2-3 weeks of cleaning. And it created the kinds of problems with her siblings I talked about above.

    And so my mom felt constant guilt. Guilt that she wasn’t there for her mother. Guilt that she wasn’t there for her siblings. Guilt that when she did show up to give her siblings a break it pissed them off. Guilt that it created tensions in her marriage. And guilt that it created problems with her kids. She’d get mad and lash out. And then she’d feel bad about that too. I think everyone in the situation felt bad both about the situation and about making everyone else feel bad who was in it. But we kinda did it all the same.

    My grandmother has been dead for several years now. And now, as well look back at it, I think we all admire everyone for what they did. I admire my uncles, aunts, and cousins for the work they did day-in and day-out to help my grandmother. They all speak fondly of the times my mother would arrive for a couple weeks and give them a break from worrying. A break from that day-in day-out grind. The chance for a vacation, or just to sit in their own homes for a bit. And I think my mother knows she did what she could, given thee life she was living. She still feels bad at times, which makes me sad.

    I know this is not a particularly cheerful story. But I tell it to you because I want you to know that you’re not alone in all of this – lots of folks have gone through it as well. And it’s tough. Family will get mad at you and frustrated with you. You’ll get mad at them. Tensions will run high. But you’ll also get through it. I think talking about it on this blog and off this blog and with others will really help. In part to know that you’re not alone in what you’re going through. And in part to help get advice on how to avoid pitfalls that others of us have tumbled into.

    I think it’s interesting how there have been a strong string of postings on choices and constraints… This is certainly one of them (home, work, career, care, family). We should make that a tag.

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  3. First, please keep joking! I think it’s essential for tough times. One of my best friend’s mom has Alzheimer’s and we joke all the time (not about her mom so much, though).

    Second, have you talked to your sister about what you have to offer besides moving home? Maybe if you asked her if she wants you to do the research, rather than just doing it, that might go over better? Or perhaps this is your current approach.

    Lord knows I am grateful not to have to deal with this yet, but you are helping me figure out what to do when the time comes. Thanks for your honesty.

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  4. Tina, I’m so sorry to hear about your mom. I can, in a way, sympathize. My grandmother suffered a series of strokes that left her ambulatory, but without her memory. It was hard to watch. At first we tried putting her in a nursing care facility, the same one her sister was living in, but she repeatedly escaped. She was insistent she had to feed her cats. Eventually we were able to find an excellent live-in nurse, which allowed my gram to stay in her home for quite a long time. There are lots of resources out there, and you and your family will find one that works for you.

    Good luck to you.

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  5. Tina, I’m so sorry that you have gotten such difficult news. Any chance you could have a conversation with your sister about how she thinks you can be helpful given that moving back is not an option? Also, I suspect your father will need a lot of support. One would think, especially in such a densely populated area, that there may be support groups for family members of those with Alzheimer’s. That’s something I’d look into. (See below as to why I am not completely clueless about this topic.)

    While it is certainly true that those who stay closer to their older family members have more of the work when it comes to situations like this, it may well be the case that your sister got more of the benefits of being close at other times. That’s just a thought, perhaps not helpful, but something to keep in mind.

    Here’s a story in the spirit of related stories perhaps offering something of value. When you and I knew each other in New York, I was living with a woman who had Alzheimer’s. The tricky part is that I had no idea, because her family never told me. Perhaps they didn’t know, although that seems doubtful. I actually never got confirmation of her condition, but I’m 99.9% sure in retrospect. I realized this years later when I was watching a play about the playwright’s relationship with his mother or grandmother who had Alzeimer’s. As I was sitting in the theater, I realized that the play was almost an exact recap of that year living with that woman. I’d had such thoughts on occasion after that living arrangement had been over, but the play confirmed it for me.

    The mere fact of *knowing*, as difficult as it must be to get this information about someone so close to you, should make a considerable difference. It certainly would have made a world of difference for me. I was right out of college and I just couldn’t make sense of the situation. I hadn’t known her or her family so there was no history. That is, I didn’t know what the baseline was and whether she was now behaving any differently than she had before.

    I think the main issue is patience. You will need a lot of it. That was the biggest issue by far. There were occasional incidents that were difficult, but the confusing communication on a daily basis was the hardest and since I had no way of understanding the source of it, I didn’t know how to interpret it or deal with it. Having to repeat things multiple times does not, in and of itself, have to be such a difficult issue if you know the reason for it and you anticipate it. I’m not saying it’s easy, but it’s different when you have identified a reason.

    An issue that complicated things was that even though there was a nurse coming in often, she was still alone quite a bit. This is when bad things happened (and as I got home from school I’d have to deal with some of them, for a woman I had no relationship with other than renting a room in her place). It doesn’t sound like your Mom will be alone per se so that should help. But this is why I suspect support will be necessary for your Dad.

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  6. I am so sorry, Tina. What heartbreaking news.

    I think Eszter’s advice is spot on. My mom was the one who was closest to home when my grandparents began to decline significantly, and she was the child with the least flexibility or resources to care for them. She managed, though, and while it was hard for her, she took great pride in the fact that she was able to do that.

    I do think that communication is key. It’s important to know that siblings are thankful and realize what those close to home are doing, and I think a conversation with your sister about what you can do, short of moving home, would be an ideal first step.

    Good luck to you, your sister, and your father.

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