Tag Archive | dementia

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.

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Grateful

Filled with gratitude tonight. I am grateful for my aunt and uncle, who drove all the way from Ohio so my aunt could see her sister… and grateful that the timing of their visit meant I could go do an 8-hour workshop on Sunday and not be distracted by worrying about Mom. Aunt Alice took this picture of us.

Mom Sep 3 2017

I am grateful for my niece, Sarah, who has visited her grandma several times (both at the hospital and the SNF), so that I can have a break. I am thankful for the friends from church who visited her in the hospital while I was away in Oregon, and for all the family who have called or sent cards or flowers. I appreciate my friend Joy who visited today and brought a new kind of nutrition shakes for Mom to try, since it’s still a struggle to get enough calories in her. Also Joy’s visit meant I could take a couple hours off and go to my restorative yoga class, which I really needed!

I am so, so grateful that Mom is finally feeling like herself again — that she’s not only physically stronger today, but has less anxiety and improved cognition. Today was a good day. She was up in the wheelchair for much of the day; she got a shampoo, cut and style by the beautician who comes to the facility every Wednesday; and when I came back around 2:00 pm she was able to tell me everything they’d served her for lunch, and also talked about Sarah’s visit the night before. So much of the time Mom doesn’t remember that someone visited ONE HOUR before, so that she was able to recall Sarah reading to her last night from her book of daily meditations on scripture feels like a small miracle to me.

It also feels like a miracle that even though some staff member screwed up and forgot to put her back on oxygen when returning her to her room (she was without oxygen from at least 4:15 pm until a little after 7:00, when I arrived to question it), she didn’t have trouble breathing and remained cheerful and talkative… and when I asked them to check her oxygen level, it was still at 94.  I’m so glad for this sign of her returning health that I’m not even angry about what could have been a dangerous error. (Well, anger might come later. A complaint will definitely be made.)

Right now, I’m just grateful.

Every time I go away

The nurses all agree that Mom needs to spend more time out of bed. Sometimes she’s amenable to this and other times she just wants to rest and gets annoyed when the CNAs try to get her up. Yesterday I spent a couple hours with her in the morning and then went back around 2:00 pm. She had insisted on going back to bed after lunch, the CNA said, but we got her up again by tempting her with the root beer floats they were serving in the dining room.

She enjoyed the float, and I sat with her for a while, playing Words With Friends on my phone while she did her word search puzzles. Half a dozen other residents in wheelchairs were watching the movie on TV. When I needed to leave (around 3:30) to get ready for a friend’s 40th birthday party, I felt a little uneasy about leaving her there… but I knew if I took her back to her room she’d just lie down again, so I told myself she’d be fine for the hour or so before they would have brought her in there for dinner anyway.

This morning I got to the nursing center around 11:00 and she’d already been taken to the dining room for lunch. She was flipping through an old issue of People magazine when I pulled up a chair and sat next to her. She told me she “must have had a dream”: “You and I were eating in here together and then you had to leave to go somewhere, and suddenly it seemed like I was in the middle of something, that I wasn’t ME at all…” She floundered a bit to explain, concluding that it felt like she was a character in a story, and like she was watching the story unfold. I told her I often have dreams like that, and we moved on to other topics. But then she brought it up again, asking me to please make sure to take her back to her room before I leave because “I get sleepy and sometimes there’s no one around to take me back.”  A little later, when I started to get up to do something, she grabbed my arm and said “Don’t leave me!”

I don’t know if she dozed off in her wheelchair after I left her yesterday or what, but from now on I’m listening to that gut instinct that tells me something is not OK. This evening, for example. I’d spent almost 3 hours with her earlier in the day and my niece Sarah was going to visit her after she got off work, so that I could go to a planning meeting for an event I’m helping to organize. When the meeting got postponed, I thought about taking the evening off. After all, Sarah was going to be there by 7:00. But something told me I needed to at least drop by quickly to check on her.

I arrived at 6:15 pm and found her in a nearly empty dining room, working her puzzles. When I asked how she was feeling, she replied “Not good. I ate a bowl of soup and threw it right back up.” She hadn’t been able to eat anything else after that, and she said her stomach still felt queasy. I took her back to her room, stopping on the way to ask at the nurse’s station if we could get her something for nausea. “I’m so glad you came back!” Mom kept saying. Of course I came back, I said, kissing her forehead. “Well, sometimes you have meetings,” she said querulously.

Oh, and then there was the 90-minute wait for a CNA to come and change her wet diaper. I could rant about that, but I’m just tired. I feel like I have to be there almost all day every day to ensure she gets adequate care. It seems like a new problem occurs every time I go away.

 

 

Turning Slowly

I didn’t see Mom over the weekend because I was back-to-back-to-back with other commitments. Until recently, I felt so guilty if I couldn’t take her to church. But now half the time we (my niece or I) go to pick her up on a Sunday morning, she’s still in bed – even though we’ve given up on 9:30 Sunday school to give her an extra hour of sleep. So I  just called her caregivers and told them they could let her sleep in yesterday and I’d come by later.

After work today I dropped by with her rent check and the new lightweight “transfer” wheelchair. It’s going to be great. I sat in it for the hour that I visited with Mom, and it’s quite comfortable. It folds up nicely and is light enough that I can pick it up and carry it under one arm. (Well, maybe not under one arm with the footrests attached.) Mom looked great, bright-eyed and alert; and when I asked how her knees were doing, she said they’re not bothering her so much and showed me that she could bend the knees and stretch out her legs without pain.

I noticed a couple of things that tell me things are changing, though.

Her memory, which has been on a plateau for these last couple years, seems to have slipped a bit further. She asked how my day was, and I regaled her with a story of the ridiculousness of my Monday at work. A brief pause, while I rub her calves and she looks at the TV, then she looks back up at me. “So, how was your day?” I found an unopened envelope on the table next to her bed from her sister, Alice, and handed it to her. She opened it up and read the letter out loud to me, two sides of one sheet of paper, typed in large print. She finished the letter, turned the page over to the first side, and said “Oh, I haven’t read this. Should I read it out loud?”

Also, she seemed to be having a little trouble reading parts of the letter, and I couldn’t tell if it was her eyesight (she does have macular degeneration) or if she was getting confused. I’m going to ask her caregivers if she’s still actually reading the pile of books on her end table. It may be time to quietly remove most of them and replace them with large print books. And if anyone has suggestions for a device to play audio books that an 89-year-old dementia patient can manage, please let me know.

No One

Yesterday was the annual holiday party at my mom’s care home. I stopped at the bank for crisp bills to put in the Christmas cards I was giving to the staff and arrived a few minutes late. Mom was sitting at a card table with two chairs, wearing a festive red top that was her Christmas gift from the owner of the facility. I kissed her hello and took the seat across from her. Looking around, I was happy to see that no one was sitting alone and each of the residents had at least one visitor with them at their table.

It’s a weird sort of party because the visitors never seem to talk to each other, just to the loved one they’ve come to visit and to the staff. But during dessert, a slightly built older woman approached our table while my mom was in the bathroom. “You’re Dorothy’s daughter, aren’t you?” I nodded and we introduced ourselves, shaking hands. “They tell me your mother is very kind to Jenny and talks to her. Thank you.” I shrugged off her thanks, telling her that my mom is very social and is happy to have someone to chat with.

The woman, who I initially guessed might be Jenny’s sister, shook her head sadly. “It’s so hard to see her like this. Jenny was always so well informed, and now…” She trailed off and I nodded sympathetically. It is hard. The woman went on to tell me that Jenny was a librarian for many years and, back in the 1970s, a labor organizer. “I was the head librarian,” she explained. “She worked for me for many years. After she retired, she worked part-time at the senior center until a couple of years ago.” She further explained that Jenny has no family except two brothers, one in Seattle and the other overseas.

I was touched that she had come to visit Jenny, to share the holiday party with her, despite her apparent discomfort with the dementia that has reduced her articulate, well-informed colleague to a state of childlike dependence. I was struck by, as hard as it is to deal with a parent or grandparent with dementia, how much harder must it be to see a PEER in that state. There but for the grace of God, and all that.

Later, as I was getting ready for my next holiday party, I kept thinking about Jenny who has no family around, no one to look out for her best interests. I don’t have kids, or a husband anymore, so this could well be me someday. It’s a sobering thought. I don’t know how Jenny ended up in this board and care, but I’m glad that she did because I know the staff, and I trust that she’s getting the same good care that my mom gets — even without a daughter to check up on her and advocate for her. Still, she must get lonely. When we get back from our holiday travels, I’m going to make a point to check on Jenny whenever I visit.

 

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Mom and me: Don’t we look festive?

 

 

 

Ghosts of Thanksgivings Past

It was three years ago this week that I started this journey with my mom, as Facebook helpfully reminded me – calling up in its Memories section those angst-ridden first posts about her car accident, the fear of a possible stroke, the irrefutable discovery of dementia symptoms. I remember how scared I was for her, how helpless I felt being far away, how much I worried about making the right choices on her behalf. I didn’t feel up to this new level of responsibility that had been thrust on me overnight.

Two years ago, Mom was recovering after another hospitalization and I didn’t know if she’d be out of skilled nursing in time to spend Thanksgiving with me. She entered my apartment in a wheelchair, my friend having thrown out his back helping me haul her and the chair up the seven or so steps into my building, spent much of the visit sleeping and only ate a few bites of the turkey dinner. I thought I’d have to move into an accessible building if I were ever to bring her to visit me again. When I drove her back to the assisted living hotel the next day, we found the roof leaking and she had to be moved into another room – and I fretted and stressed about leaving her there alone.

How thankful I am that this year she could climb the steps on her own (with me at her side, of course, holding her steady) and had the energy to enjoy a lively Thanksgiving dinner with my friends, even after a relatively late night at the Thanksgiving Eve service at her church. She ate heartily and said many times how much she enjoyed herself, though she did retreat to the sofa with a crossword puzzle as the evening wore on. (One of the advantages of old age, I suppose, is you don’t have to pretend to be engaged in a conversation that isn’t holding your interest. You can just go do something else!)

And I am thankful for my friends, who make a point to spend time talking to her and treat her kindly and don’t laugh when she talks or sings to herself while working her puzzles.

We got off to a shaky start today because she said she didn’t need to visit the bathroom and I didn’t insist, and then she had an accident. She seems so much like her old self these days, I sometimes forget just how much help she still needs. But I got her cleaned up and dressed in fresh clothes, and  after we had pumpkin pie and coffee for breakfast she insisted on helping me with the dishes. Then she took a nap on the couch while I got some work done on my computer.

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When I took her home this afternoon, it was to a place that has truly become her Home, a place I am thankful for every single day. Life is good, and we are truly blessed, both of us. So thankful.

 

 

 

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.