Tag Archive | memory loss

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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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.

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.

Diagnosis: NPH

No, not Neil Patrick Harris… Normal Pressure Hydrocephalus. I’d never heard of it until Thursday, when Mom finally had her follow-up with the neurologist.

In layman’s terms, what it means is that Mom has an excess of cerebrospinal fluid in the ventricles of the brain, which causes the ventricles to enlarge and press on different parts of the brain. The most common symptoms are balance/gait issues, mental confusion (dementia), and urinary (and occasionally bowel) incontinence. Check, check, check. Dr. O said that the CT scan is not definitive on this, but that since the ventricles do appear enlarged on the scan and Mom has all the classic symptoms, it is by far the most likely cause. And check out this more detailed list of symptoms I found on WebMD.

Symptoms  include:

  • Memory loss
  • Speech problems
  • Apathy (indifference) and withdrawal
  • Changes in behavior or mood
  • Difficulties with reasoning, paying attention, or judgment
  • Walking problems
  • Unsteadiness
  • Leg weakness
  • Sudden falls
  • Shuffling steps
  • Difficulty taking the first step, as if feet were stuck to the floor
  • “Getting stuck” or “freezing” while walking

My mom has had every. single. one of these symptoms over the past year.

Unlike Parkinson’s Disease or Alzheimer’s, there is a treatment for NPH that can sometimes reverse most of the symptoms. But it is very invasive. A neurosurgeon drills a tiny hole in the skull and puts a shunt into the ventricles to drain the excess fluid to another part of the body. The success rate is highest for patients who are only exhibiting the gait disturbances and have little to  no dementia or incontinence. Dr. O said that many neurosurgeons may refuse to do the procedure on someone with my mom’s health issues and advanced dementia. Understandably, I think. If my mom were a decade younger and this procedure had a chance at reversing her symptoms and giving her another 10-15 years of a normal life, it would be worth exploring. But at this point in the game, I think the risks of anesthesia outweigh the possible benefits.

I left the neurology office with my head spinning, wishing with all my heart that my dad (a former anesthesiologist) was still alive to counsel us on what to do.

When I brought her back to the care home after our appointment, we pulled into the driveway and she asked “Is this my place?” I answered in the affirmative. She said thoughtfully, “They picked me up from another place, my friend’s house. I don’t know if I’m ready to be alone here.” Oh no, I told her, you won’t be alone. This is where you’re staying with the other ladies. “Good,” she said.

There is no other treatment for NPH, no drugs that have been found to be particularly effective. So we stay the course, basically. The neurologist is increasing her dosage of the Parkinson’s drug, which may still have some benefit for her balance and gait (so far it doesn’t seem to be doing much), and she’s staying on Namenda in the hopes of slowing the mental deterioration. Dr. O said that it’s likely she will worsen considerably “in a couple of years” and require a higher level of care. But she’s turning 86 tomorrow, she has congestive heart failure, atrial fibrillation and chronic kidney disease (either stage III or stage IV)… and she might only have a couple years left here anyway.

So I’m really just hoping that the drugs will keep her symptoms in check and give her a couple of pleasant  years at this wonderful care home with the friendly residents and caring, compassionate staff.

Coming Home

I saw my mom this evening for the first time in a full week. The last time I stayed away that long was probably sometime last fall, when I had the flu. I was out of town Thursday through Monday and felt under the weather yesterday, so I stayed away… just in case I was coming down with something contagious.

So, anyway, I saw her tonight… and I was brought up short by how thin she looks, how very frail. She’s 5’7″ and weighed in at 167 the last time she got on a scale at the doctor’s office, and “underweight” is not a word that I’ve EVER associated with her. She’s still got some heft to her hips and thighs, but her arms and hands look like skin and bones. When did that happen? Is it just more noticeable since I’ve been away for a while and missed the day-to-day changes? I’ve been told she’s eating better at the new place… so why is she still wasting away? It was very disconcerting.

She lit up when she saw me and gave me a tight hug. I took her back to her bedroom so that I could plug in my laptop and do a slideshow of the pictures I took in Colorado, taking time to tell her the stories behind each picture. She seemed to enjoy them. I talked about the graduation events, brought her up to date on the latest goings on with her grandchildren, and also shared about the really special time I’d gotten to have with my sister, Mary Lou.

Then, since it was a very pleasant evening, I took her outside to sit in the back yard. Maria, the head caregiver, came and put blankets on the patio chairs for us and brought my mom a light sweater. We sat there for a few minutes, drinking our bottled water and talking, and then Mom asked if I would take a walk with her around the edge of the yard to look at the flowers. Her walker doesn’t roll well over the grass, so we left it behind and walked slowly, arm-in arm, Mom leaning on me for support. She showed more interest in the various bushes and flowers than she had in the family pictures, asking me numerous questions about the types of plants (which I could never answer). When she leaned forward to reach for a blossom and overbalanced, and would have fallen if I hadn’t been holding her arm, I decided it was time to go back to the patio… via the porch, so she could hold the railing on one side and my arm on the other. We sat for a while on the patio, listening to birds and watching the changing colors of the evening sky.

back garden

“Who lives here?” Mom asked me suddenly. “Is this Mary Lou’s house?”

I tried not to show my surprise and just answered calmly, “You live here, Mom.”

“I do?!?” she exclaimed. “Who else lives here? Someone must…”

I started to explain about the five other ladies who live in the house, and how Maria (who brought her sweater) is one of the helpers who take care of them. She knew who I was talking about, which was a good sign, but said “I haven’t been here for a while, at least a week. I’ve been staying so many different places, and my memory is so bad these days…”

(She’s been at this home for a month now and she hasn’t gone anywhere else, except for brief outings with me – to church or to get her hair cut or to the doctor. In fact, I’m pretty certain she hasn’t left the house for a week.)

I squeezed her arm and told her that I was sure it would all be familiar once we went back inside. And sure enough, she recognized her bedroom and the TV room where her friend Georgia was waiting for her to come watch Wheel of Fortune. She settled into her recliner and seemed perfectly content to be there, so I took my leave… and walked to my car feeling pensive and sad, wondering how much further she had slipped away from me in that one week I was gone.

Fastening My Seat Belt: Turbulence Ahead

I was bracing for another cognitive decline to follow this hospitalization, but she seemed so lucid and aware yesterday that it caught me off guard when I got a voicemail from her shift nurse this morning saying my mother was concerned that I might not know she was in the hospital. I was with her for six hours in the ER on Sunday night and for about seven hours yesterday. She seemed as sharp and aware as she ever is when I left last night. But this morning, all of that had been erased. She didn’t know where she was or how she got there.

I had to go back to work today; I couldn’t afford another day off and it’s a day full of meetings that require my support. I had no choice, but I felt guilty for not being there. At my first opportunity to get away from my desk, I called the hospital and was transferred to her room. She fumbled a bit with the phone, dropping it twice before finally answering. In a halting voice, with long pauses as she struggled to find words, she tried to explain something about the phone, about why she’d had trouble answering. Finally she gave up and concluded “Oh well, I’m talking now.”

I asked her how she was feeling and she told me she feels fine, just really confused. “There are huge holes in my memory,” she said. “I don’t know where I am or what’s real.” She sounded frightened. I tried to reassure her by explaining that she’s in the hospital because they found an infection in her blood which is being treated by IV antibiotics. I told her that I had brought her to the ER on Sunday night and had stayed with her most of the day yesterday, but I had to go back to work today. “I don’t remember any of that,” she said anxiously. I gently told her that it’s OK, that she’s safe and in good hands, and she just kept saying how confused she felt. I suggested that the confusion might be caused by the infection because the last time she was sick enough to go to the hospital she experienced the same thing. Then I just kept reiterating that she’s in good hands, getting good care, and has lots of people praying for her.

The last time she was hospitalized, she took a significant cognitive decline and never recovered a lot of her prior functioning. If that happens this time, I don’t know how much more of her essential personality and nature will slip away from us. I’m scared, but I can’t let her see that. I have to be the voice of calm, like the flight attendant reassuring passengers startled by turbulence that if there is a loss of cabin pressure oxygen masks will automatically drop. Meanwhile, I’m fastening my own seat belt because this is going to be a bumpy ride for a while.

A New Diagnosis

Mom finally saw the neurologist today. When I told her about the appointment last night, she asked “What’s the purpose for seeing this new doctor?” I didn’t want to talk about dementia, so I said the first thing that came to mind – that her regular doctor was concerned about her balance issues, as evidenced by the recent falls, and had referred her to a neurologist. I hoped I wouldn’t look like a liar when her falls weren’t the focus of the doctor visit, but I figured she probably wouldn’t remember by then anyway.

It was a long appointment for an office visit, but Mom was a trooper. First the nurse gave her one of those mini memory tests, where they ask basic questions like “what day of the week is it?” and “what year is it?” and “do you know what state you are in?” and then ask you to write a sentence and draw a diagram. She ACED that test in December, getting only one question wrong. I was slightly concerned that if she did too well on it this time, they would dismiss my concerns about her dementia. I needn’t have worried. She flunked this one good and proper. She thought she was in Arizona but couldn’t name the city, had no idea what day of the week or year it was, but was fairly confident that today was sometime in November. For the writing sample, the nurse told her to write a sentence – any sentence you want. I jokingly asked if anyone had ever written “This test is stupid” as their sentence. The nurse chuckled and said no, not that she could recall. When she collected the test paper from my mom, the nurse read her sentence out loud: “This is fun.”

Then a young man whose name tag identified him as Sam, a medical student from USC, came in and asked Mom several of the same questions. This time she answered that the month “must be July” and gave the year as 2018. Interestingly, though, she knew that it was winter – less than a minute after saying that it must be July. Both of those are understandable, I think, considering that this is her first Southern California winter and it was 80 degrees today. But where the hell did 2018 come from? Sam the med student also did some tests of reflexes and muscle strength (“You’re strong!” he told her with a grin), asked me a bunch of questions about her medical history, and had her walk across the exam room and back without her walker, noting her shuffling gait. I liked Sam. He was friendly and kind, listened attentively, and had taken time to read the notes I’d faxed over the day before documenting her symptoms and their progression over the last year.

Finally, Dr. O, the neurologist, came in. She started off with some of the same basic questions. Mom again gave the year as 2018, thought she was in a hospital (not a doctor’s office), but this time she correctly identified the current month as February. Dr. O asked her “What kind of doctor do you think I am? Am I a heart doctor? A foot doctor? Or what kind?” Mom looked thoughtful and answered “I don’t know, but I know I don’t need a heart doctor.” I think I saw Sam the med student smile at that, and it was all I could do not to laugh, considering that we’d just had a five-minute discussion about her heart conditions and medications.

And here’s the irony: her falls and balance issues did turn out to be one of the focuses of the visit. After observing her shuffling walk and the slight tremors of her hands (which is a brand new symptom I’ve only noticed in the last couple of weeks) and hearing about her falls, the doctor’s preliminary diagnosis (pending CT scan) was age-related Parkinsonism. My mom’s younger brother, my uncle Tom, had Parkinson’s Disease. Dominic at her assisted living community also has it. Parkinsonism, Dr. O explained to me, is not the same thing as Parkinson’s Disease but it has some of the same symptoms including gait and balance issues, postural instability and tremors. Memory loss and disorientation can accompany it, but Dr. O said those symptoms usually show up much later than the physical symptoms. Since Mom’s memory issues started at least a couple years before we noticed any of the Parkinsonism symptoms, she suspects there is another neurological disease (she turned away from Mom and mouthed “dementia” to me) at work here. I guess the CT scan will help identify what kind of dementia. The “A” word (Alzheimer’s) was never mentioned.

We left with orders for blood work and a CT scan and two prescriptions – something commonly prescribed for Parkinson’s patients to help the balance issues and Namenda, commonly prescribed to Alzheimer’s patients for memory loss. Dr. O wants to see her again in two months, which seems to me a long time to wait to go over the results of the CT scan and blood work. But I’m hoping, between the new meds and the physical therapy that is supposed to start this week, that we’ll be able to report some improvement in her mobility by then.

As a reward for being such a good sport about the 90-minute doctor visit, I took Mom out to dinner and we shared some warm apple pie a la mode for dessert.