Tag Archive | conversations with Mom

Difficult Conversations

“I don’t know what I’d do if I didn’t have you,” she said to me yesterday. “I think I’d just give up.” This is the second time in recent weeks that she’s used the phrase “give up.” That’s new for her. I don’t like to hear her talk like that.

Today we saw the kidney specialist and had another difficult conversation. Her kidney function is down to 13% and it’s time to talk about whether or not she will choose dialysis when the time comes. The doctor explained that she would only be a candidate for dialysis at a dialysis center, and that she would likely have to go three times a week to be hooked up to a machine for three hours each visit.  He said that it’s not painful, just uncomfortable, and that the worst side effect most of his patients have from it is fatigue, while some actually feel better and more energetic once they’re on dialysis. He went on to explain that she doesn’t need dialysis YET, but the reason he brings it up now is because she would need surgery a couple of months prior to starting dialysis, to make a fistula in her arm for the access site.

Mom shook her head firmly and said “I’ll just go home to Heaven.”

I squeezed her hand and told her she doesn’t have to decide anything now. We’re not there yet. “No,” the doctor echoed, “We’re not there yet. And there’s a lot to consider.”

Yeah. Like how in the world I would GET her to a dialysis center three times a week, for starters. I’ve already been out of work for almost seven months, and I have to go back to work as soon as possible. Once I start a new job, it will likely be quite some time before I can manage even half a day off ONCE a week.

But the bigger question is, how much would dialysis help? I’m only just starting to research this, but my initial findings on the internet tell me that there are pretty serious risks for patients over the age of 80. She’ll be 90 in in a little less than three months, and with all her other health conditions, I’m not even sure if she’s a good candidate for dialysis at all. But once it’s determined that her kidneys can’t function without dialysis, she may only live a few months.

I’m not ready for this.

I’ll close this with some good news. The two Procrit injections she received bumped her hemoglobin count up from 7.9 to 9.6, so the doctor says she’ll only need them once a month at most.


Back to (almost) normal

Mom was discharged from the SNF on Friday morning. Once I’d handed everything over to the caregivers and gone over the discharge paperwork with the owner of the board and care, I went home and collapsed for a couple hours. Yesterday I dropped by briefly in the morning when the home health nurse came to evaluate whether Mom will need skilled nursing services at home, and Mom was disappointed that I didn’t stay long. So I promised to come back for a longer visit today.

She was finishing her lunch when I arrived around 1:30. Her appetite seems to have returned, which is encouraging, and she said she was feeling good. I brought out the Scrabble game; and although she started out by saying she wasn’t sure she’d remember how to play, it came back to her quickly.  We played two games and she beat me by over 30 points both times! She seemed like her old self.

When I was putting away the game, she looked around and asked “Whose house am I at?” I told her it’s the house where she lives and she looked surprised. I pointed to the two caregivers who were working in the kitchen and asked if she recognized them, and she said yes and the house looks familiar too, “but I’ve been visiting around so much lately, I think lots of places look familiar.”

This is why traveling is hard for people with dementia. Staying in different places is disorienting and they can lose their connection with the place that is home. Today I know for sure that I made the right decision in discontinuing any travel with Mom, and I hope she’ll get to stay in her cozy board and care for a long time. I look forward to many more games of Scrabble.

It’s enough just being in the same space

Tomorrow I leave for my 9-day camping retreat. I wanted to spend some time with Mom before I left, but I’ve had so much to do to get ready for this trip that I haven’t had a spare minute. My compromise was to pick her up after work yesterday and bring her to my apartment to keep me company while I worked.

When I arrived to pick her up, she was reading the new Jan Karon novel that I bought her for her birthday and I suggested she bring it along. On the way over I bought her a chocolate milkshake, since I knew she’d ask for coffee or something sweet and I didn’t have either on hand. She was quite happy sitting and reading on my couch while I cleaned the kitchen. As she put it, “We don’t always have to be talking to enjoy each other’s company. It’s enough just being in the same space.”

After my husband died in 2010, I went to stay with my mom for a few months. I remember what a comfort it was just having another person around, even if we were at opposite ends of the apartment and didn’t talk for hours at a time. I’ve grown to love living alone (with my cat), but Mom never did get used to it after Dad died. I think that’s one of the reason she’s so happy at the board and care, because she is literally never alone there.

We sat on the couch and talked for a little while. Mom reached over to my end table and picked up a framed photo taken on her 79th birthday – the very last picture of me with both of my parents, on my last visit to Arizona before my dad died. “I don’t remember him looking this old,” she said, “with all that gray in his hair. I know he was older when he died, but in my memories he’s young.” We talked about Dad and shared some memories. It felt good to make that connection.

Three of Us 2007

We also talked about my upcoming trip – several times. And every time I mentioned something about it, she would ask me “Where are you going again?” I lost count at the seventh time in less than two hours. She’s been doing better with her memory lately, so that was just a little bit disconcerting.

When I dropped her off back at the board and care, I picked up the notepad she keeps beside her chair and wrote her a note explaining when I was leaving, where I was going and when I would be back. I signed it “I love you, Mom!” I hope that if she starts to wonder why she hasn’t heard from me, she’ll think to look at it. And I hope the next 9 days go by quickly for her…

… though not TOO quickly for me. I want to relish every unplugged minute of freedom to just take care of myself.

Girls of All Ages Have Drama

I read a great article (Mean Girls in the Retirement Home)  recently, and it got me thinking…

I didn’t witness out-and-out bullying at the two assisted living communities where my mom lived, but I definitely saw that there was a pecking order, with those who were still mentally sharp shunning those who were cognitively compromised. I used to worry about Mom being mistreated as her dementia advanced. So, first off, I’m thankful that we got her out of that dynamic and that she now lives in a homelike environment too small for cliques.

But I had noticed the last couple of times I visited that they’d moved the chairs in the TV room, separating Mom from her chatterbox friend Georgia… and that Miss Chatterbox (or, as Mom calls her, Miss Know-It-All) seemed quiet and sullen. The article got me to wondering if there had been some kind of Mean Girl drama. So when I took Mom to get her nails done yesterday, I asked her about it.

“Well,” she said. “I heard her talking about me and I didn’t like the way she described me, and I told her so.” The offending piece of description was something like “she does her own thing and doesn’t care about anybody else,” and Mom said “If that’s what she thinks of me, I don’t see how I can be friends with her.”

No one who knew my mom pre-dementia would ever describe her as someone who doesn’t care about others. She’s always been one of the kindest, most giving, most nurturing people I have ever known. So I can understand how being described in that way would sting. But I can also understand why Georgia, who appears to constantly need someone to listen to her and validate her, might be hurt if Mom started tuning her out so that she could focus on her crossword puzzles. Aside from the staff, my mom is the only person there capable of making intelligent conversation… so I suspect Georgia might be sorry she’s burned that bridge.

We never do outgrow the drama, do we? LOL Well, hopefully it will soon be water under the bridge.

Ice Cream and Choo Choo Trains

Sorry for the long absence. Mom has been doing really well and I’ve been able to focus a little more on my own life the past few weeks. About a week ago I took her to an ice cream social at her church, which she really enjoyed. After ice cream sundaes and announcements about the women’s fellowship programs, they played Bunco – a dice game that involves lots of changing partners and moving from table to table. I was a bit nervous about it because I wouldn’t be able to stay with Mom throughout to help her keep track of the rules or her score. There was no room between the tables to maneuver her walker, so we left it parked in the corner. She did just fine. She must have gotten up and down, on her own, at least a dozen times. When she needed a hand, someone was there to lend one. When she forgot to tally her score, someone reminded her. She had a blast!

This afternoon I took Mom to her three-month followup with the neurologist. Dr. O was pleased with the improvement in her gait and balance, and with what I reported about her increased leg strength. We don’t have to see her again until December. When we left, I asked Mom if she wanted me to take her to get her hair cut, but she wasn’t in the mood for that… so we went to Foster’s Freeze for milkshakes instead.

On the way there, we were stopped for a bit at a railroad crossing while two commuter trains zipped by, one going each direction. Mom was very interested in them. After the trains passed, she turned to me and said “I’ve been thinking, the next time I go back to Ohio, I’d like to take the train instead of flying.”

The train? To Ohio?? That’s over 2,000 miles! It would take DAYS.  When I expressed that concern to Mom, pointing out that the travel time would significantly cut into the time we would be able to spend with family once we got there, she said we could fly home. She wouldn’t be dissuaded from the idea, so I finally told her that I would do some research – find out what it would cost and how long it would take to get there. “I hoped you would,” she said.

Personally, I’m hoping she forgets all about this. Though I’ve always wanted to travel by train, I don’t think I’d sign up for a journey that long even with young, healthy companions to join me. A 43-hour train trip with an elderly dementia patient might land us BOTH in the hospital! Besides, the sleeper cars cost almost twice what it will cost to fly Southwest.

It would be fun to ride a train together sometime, though. Maybe just a short trip, like up to Santa Barbara for the day…

The Latest

My car broke down on Saturday afternoon as I was on my way to visit my mom. I had to call AAA and get it towed. It was too late in the day to get a rental car anywhere except at the airport, and I didn’t feel like hassling with public transportation to get out to the airport, so I just made a reservation with Enterprise for Monday morning. I knew she would be disappointed about not seeing me this weekend and about having to miss church, but it couldn’t be helped.

On Sunday a dear friend offered me a ride up to Mom’s place, and came back an hour and a half later to take me home, so that I could at least spend some time with her. I brought her belated birthday gift – a digital picture frame – and we spent most of my visit watching the slideshow and talking about the family photos. She seemed very lucid and clear, and remembered nearly everyone in the pictures, and we had a lovely visit.

We moved a chair in her bedroom so that she could sit and look out the window, and we talked for a while about the pretty flowers and trees and what a nice job the owner has done with the landscaping. Then she said something that caught me by surprise.

“When you get your car fixed, we should go over to my apartment and see what I have there.”

(Umm, what? What apartment?) “Is there something in particular you need or just want to get?”

“No, I just want to see if it’s even worth it to still be renting an apartment when I’m staying here. Maybe I should get rid of it.”

“Well, actually, all your stuff is in a storage unit, Mom. You don’t have an apartment right now.”

“Oh,” she said. “Good.”

I let out the breath I’d been holding. Then she surprised me again. “A couple of months ago, I went by there and there were some young guys there. I thought maybe the apartment had been sublet. It didn’t feel like my place at all.”

(Okaaaay… She doesn’t go anywhere unless I take her, and I’ve avoided even driving past the assisted living place where she lived for her first eight months in LA. What apartment is she even thinking about? Maybe she dreamed it?)

All I said was, “Yeah, it’s funny how once you move on, your old place doesn’t feel like home anymore.”

She nodded. “This is home now.”

I got the word on my car today. The transmission needs to be rebuilt and the clutch replaced, for a total of $2300. That’s going to take all of the money I had been saving to move into a handicap-accessible apartment building so that Mom will be able to visit me in my home. It will likely be at least a year before I can move now, and I don’t know what we’re going to do at the holidays if she’s not able to climb the seven steps into my building. But it can’t be helped. I can’t be without a car, especially not when she’s dependent on me for transportation, and I can’t afford a car payment on top of her medications and incidental expenses that I became responsible for when we moved her into the care home. I guess all I can do is pray that she’s healthy enough and strong enough to climb those stairs, with assistance, come Christmastime.

No Filter

My mom is the sweetest person, but dementia has damaged her “filters” and she’s not as tactful as she used to be. She pretty much just says whatever comes into her head. Two recent comments she made to me:

“I like your outfit.” (Thanks, Mom.) “It doesn’t hide the belly, though.” (Ouch.)

“What’s that on your arm?” (It’s a mole. I’ve had it forever.) “Well, why don’t you get it removed? It’s ugly.”

Maybe this is payback for the time I walked up behind her sitting on our back steps when I was a kid, looked down at the top of her head and said “Eww, Mom! Did you know your hair is all gray on top?” Heh.

Today we were having dinner in a local diner and a woman walked in. She was probably around 70 with peroxide blonde hair, makeup a la Tammy Faye Baker, and wearing a very short and very tight skirt. Mom laughed out loud, rolled her eyes, and commented on the woman’s short skirt several times. For once, I was grateful for her new habit of talking so softly that you can hardly hear her.