Archive | January 2014

Not Good Enough

A friend of mine has talked to me about the concept of “good enough” parenting, or caregiving as the case may be – about accepting that it’s impossible to be a perfect parent/caregiver and letting it be “good enough” to know that the vulnerable person in your care is safe, well fed, clothed and getting necessary medical attention. Today was not a good enough caregiving day. We came so close to disaster today that I’m still shaken.

Mom was referred to a gynecologist for a pelvic and breast exam due to some symptoms her PCP had noted on her last visit. I made arrangements for her ALF driver to take her to the appointment, where I would meet her. I told her about this last night and again early this afternoon. We’ve done this a couple of times and it worked out fine. But this is a new doctor in an unfamiliar office building, and maybe I should have realized that would be harder.

When I arrived ten minutes before her scheduled appointment (I meant to be earlier but LA traffic didn’t cooperate), I found her sitting on a bench in the building lobby. She had her purse in her lap and was going through her wallet. I walked up behind her and put my arm around her. “Have you been here long?”

“I’ve been here a very long time,” she said. “I don’t even belong here. Someone brought me here, I don’t know who, and they just left me here hours ago. I don’t even think he knew where I was supposed to be. He just thought he could leave me here.” She met my eyes, finally. “I was so confused,” she added. “I didn’t know I could be so confused.”

Do I need to tell you just how hard it was to hear that? It’s hard to even put the words in print, they hurt so much.

I sat next to her, held her hand, and told her that I was sorry they brought her so early and just left her here. I explained that she WAS supposed to be here because I had made a doctor’s appointment for her, and that if I had known they were going to bring her early I would have come early too. “I don’t think they knew about your appointment,” she said. I didn’t try to argue that point. I checked the time on my phone and asked if she wanted to go on up and see the doctor, since we were here. “Might as well,” she said.

I was angry that they had apparently dropped her off in front of the building, instead of taking her up to the actual doctor’s office on the third floor. I was angry that they brought her so early and didn’t let me know that’s what was happening. As we rode the elevator, I took deep breaths and tried to stay calm and smiling, for Mom’s sake.

I found her a seat in the waiting room, signed her in, and picked up the clipboard of paperwork to fill out on her behalf. I had called her ALF a couple hours before the appointment to ask them to send a printout of her medication list with her. I asked her if they gave her that. She said she didn’t think so, checked her purse, checked the basket of her walker. No med list. I called the facility and asked them to fax the med list to the doctor’s office. While I had them on the phone, I asked if they could tell me what time she was dropped off. “Well, they left here at 2:45,” I was told, “so probably around 3:15.” For a 4:00 appointment. She was alone and confused in a strange place for 30-40 minutes, and I totally understand how that could feel like hours.

(Sidebar: When I was eight or nine years old, my mom forgot to pick me up from school one afternoon. We were leaving the next day on a family vacation and I’m sure she was busy packing and lost track of time. I remember sitting outside the school, watching the other kids get into cars and drive away, one by one, until there were only a couple of cars left in the parking lot. I have no idea how long I waited, but it felt like hours. Finally a teacher came out and asked me if I wanted to come in to the office to call my mom. “Yes, please,” I said. “I think she forgot me.” It was the most awful feeling. I thought about that today and I wondered what it must feel like, as an elderly adult, to think that you’ve just been dumped somewhere that you don’t belong and forgotten.)

I went to the desk to tell them that her medication list would be faxed over momentarily. The girl held it up. “We have it,” she said. “She brought it in with her. Here,” she added, handing me another form. “I don’t think she filled this one out before she got up and left.”

Wait. What?

So, I guess the driver did bring her to the doctor’s suite. But she must have gotten confused, perhaps when they gave her all that paperwork to fill out, or because I wasn’t there – and so she left. Oh hell. My mom has never “wandered” before, never attempted to leave the place where she’s been asked to wait. It had never occurred to me that she would just walk out of the doctor’s office before I got there. Thank God she stayed in the building lobby! If she had just wandered off, out of the building, I don’t know how – or where, or in what condition – I would have found her. Holy panic attack, Batman.

We got lucky this time. She didn’t leave the building, or have a heart attack or a mini stroke from the stress. She was confused and unhappy while she was waiting, but she calmed down right away once I was with her. She did think it was rather absurd to be seeing an ob/gyn at her age (because of course she doesn’t remember the symptoms that made it necessary) and she did NOT appreciate the pap smear, but the female doctor was as gentle and kind as could be, and it was over quickly.

The silver lining of dementia is that even traumatic stuff is quickly forgotten. By the time we were in the car talking about where to go for dinner, it had all been wiped from her memory. “Good to have that over with, isn’t it?” I said, smiling. “Good to have what over with?” she asked, looking puzzled. “Never mind,” I said. “I’m going to take you out for dinner. What would you like to eat?”

The “good enough” parent or caregiver knows she can’t be perfect. She knows she’s going to make some mistakes, but she learns from them. Lessons learned: No more ALF shuttle for Mom. I will personally pick her up and take her to any appointments, though it will mean an extra 60-90 minutes of lost time from work. And no more leaving her alone and unsupervised in a strange place. Never again.

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Church

Church has always been an important part of my mom’s life. For as long as I can remember, the majority of her social life revolved around her faith – Christian Women’s Club, Bible studies, serving on various church committees. Before I moved her to Los Angeles, she had been a very active and involved member of her church in Prescott for almost twenty years. Her church family was the main reason she’d wanted to stay in Prescott after my dad passed.

Her first weekend out here, my brother found us a church to visit in Burbank. Mom liked the pastor and his teaching style and we both liked the music, so we just kept going back and didn’t visit any other churches. We’ve been there at least a dozen times. Mom still enjoys it and I don’t mind it, but there’s one thing that is bothering me.

You know that part in almost every church service where they tell you to turn and greet your neighbors? Every week, the same thing happens. One or two people sitting near us quickly shake our hands before everyone scatters to talk to their friends, and we are left sitting alone in an empty pew. Every week Mom sits there looking around her, a hopeful smile on her face, and she is ignored. I hate seeing that. I hate that I took Mom away from a church full of people who were so happy to see her every week that they practically stood in line to hug her after the service, and that I brought her to a church where no one but the pastor and his wife can even be bothered to welcome us.

If she didn’t like the teaching so much at this church, I’d be tempted to look for a friendlier congregation. But I don’t know if it would be any different at another church out here. I know from my own experiences that you don’t become part of a church just by attending Sunday services. But I don’t know how to get Mom more involved. She no longer has sufficient powers of memory or focus to keep up with a Bible study, and they don’t have a prayer group. There’s a monthly potluck for Vintage Girls, but it happens during a weekday afternoon when I’m at work – and how am I going to find her a ride when I can’t even get someone to spend one minute shaking her hand and welcoming her to their church?

Perspective Shift

My parents were older when they had me, their only child. My mom had just turned 37 a few weeks before I was born and my dad was almost 40. He retired while I was in college. All my life my folks were the “old” ones – closer in age, and often in lifestyle, to my friends’ grandparents than to their parents.

I was barely into my forties when I lost my father. For a long time, I felt cheated out of the years I thought I should have had with him – would have had, if only I hadn’t been born so late in his life.  My mom has been hospitalized four times in the last six years, and every time I’ve been terrified of losing her, too. I’ve wished that we could have more time. She will be 86 in June and has some pretty significant health issues (congestive heart failure, chronic kidney disease) along with the dementia, so I know our time left together is limited.

Today I was perusing the Alzheimer’s Association message boards and was struck by the number of people in their late fifties through late sixties who are caring for parents (or spouses) with dementia. These caregivers are old enough to have a lot of their own health issues, to sometimes lack the physical strength necessary for the hard work of caregiving, perhaps starting to have concerns about their own failing memories. I realized that, in many ways, I am lucky to be facing the challenge of caring for my mother while I’m still relatively young and healthy. It’s exhausting enough working a full-time job and then putting in an average of 20 hours a week with my mom. The stress of it has definitely aggravated both my acid reflux and my migraines. I can’t imagine doing all of this if I had any more serious health issues.

From another perspective, my mom is lucky to be facing all of this with a daughter by her side who is able and willing to care for her, whatever it takes.

Two Visits

I’ve spent a lot of time with my mom the last two days, and I feel really good about it.

Last night I joined her for dinner, which was (for a change) quite appetizing: poached salmon, couscous and green beans with a peach rugala for dessert. They sat us at a different table where there was an empty seat for me, and neither of the two men at that table was interested in making conversation, so I just talked with Mom. I kept one eye on her usual table and it seemed pretty serene with S present. Toward the end of our meal, Dominic rolled up in his wheel chair to say “I’ve got good news!” While he was trying to arrange everything for his move to the new place, his social worker has been trying to get him into the facility he really wanted. He’s been on their waiting list for four years, and it looks like they’re finally going to take him. He’ll know for sure early next week. I’m keeping my fingers crossed, and Mom and I have both promised to visit.

After dinner they had some live entertainment, a female singer with a karaoke-style backing track. She made a real effort to put on a show, with several costume changes and lots of flirting with the men in the audience, but I wasn’t all that impressed with her talent. Mom enjoyed it, though, and it kept her out of her room for an hour — so I call that a win.

This afternoon my friend visited with me for a couple of hours. We brought Mom down to the game room and played Mexican Train (dominoes) together until dinner time. After we’d walked her to the dining room and hugged her goodbye, my friend helped me program the new universal remote I bought for her TV. It’s designed specifically for seniors with only a few very large buttons. It’s programmed with just 15 or so of the channels she will actually watch, which should make it much easier to find what she wants. And now I won’t have to “fix” her TV every time I go over.

Tomorrow is church, and afterward I can drop her off and go have brunch with my girlfriends without any guilt. I’ve spent a lot of quality time with her this weekend already.

In other news…

When we saw the doctor yesterday, he agreed that she shows all the classic signs of depression. He is starting her on a low dose of Zoloft. “I’m going to give you some pills that will give you a bit more pep” is how he explained it to her. She agreed that more pep would be a good thing.

I showed up for my first dementia caregivers support group meeting last night, only to find out that I’d been given the wrong information and the meeting had happened the night before. I was really frustrated because they only meet once a month and I was so looking forward to having some people to talk with who are going through the same thing. So I spent my evening on the Alzheimer’s Foundation website and signed up for their message boards, so I can post on the Caregivers Forum. I’m also going to call them and find out if there are any other support groups in my area.

Also, I don’t remember if I shared that she had lost her phone. Thankfully, she has two cordless phones in her room (one within reach of the bed) so she wasn’t out of touch.  But I had turned her room upside down looking for the missing unit for several days. I finally found it. In her purse.

Pecking Order

I visited my mom first thing this morning, arriving in time to help her pick out clothes, brush her hair and help her with her new denture. (Apparently that assistance hasn’t taken effect yet.) I reminded her to brush her teeth, helped her find her glasses which had fallen on the floor (thank goodness she didn’t step on them!), and then walked her down to her table in the dining room and sat with her for most of the meal.

S, the friendly and talkative lady at the new table, was absent this morning. It is definitely a “lower functioning” table, especially without her. J, the lone male at the table, is a very nice guy but he looks perpetually lost and answers every question with “I don’t know” or “I have no idea.” How are you feeling this morning, J? I don’t know. How are your eggs, J? I don’t know. The other woman at the table, C, gets so confused so quickly that she has difficulty following a simple, single-step instruction like “Eat your eggs.” She also gets very easily agitated and argumentative. This morning was quite the drama, with C refusing to stay at the table and eat her breakfast because the bacon was burned and the eggs were cold – only to wander off and come right back two minutes later, asking why she hadn’t been given any breakfast. When told that was her breakfast on the plate, she started yelling about how she wasn’t going to eat someone else’s food. She gets upset when someone tells her what to do, but she’s hopelessly lost without direct instructions and complains that she doesn’t know what’s going on because nobody tells her anything. It was a Who’s On First comedy of aggravation.

I can’t help but feel like my mom’s been stuck riding the short bus and that it’s not fair to her. Yes, she’s got her own increasing cognitive issues but I don’t feel like she belongs with this group yet. She put up with it with good grace, for the most part, but at one point Mom looked at me and asked quietly “Why did I get stuck with her for a table mate?” I told her it’s probably because they know she’s kind and patient, and it takes a lot of patience to deal with C.

It’s a little disconcerting because I’ve observed a distinct pecking order at these places. The higher functioning residents tend to look down on, avoid and/or laugh at the ones who have trouble with basic activities or wander around lost. I suspect it’s motivated, more than anything, by fear of their own declining abilities. But Mom was just starting to make friends there and I don’t want her to be shunned now because she’s been classified “lower functioning.”

Oh, and get this… We were sitting outside the Med Room waiting to see the doctor on his monthly visit, and the Egyptian couple from her old table walked by. The man, F, stopped and asked how she was doing. “I miss you,” he said. “I don’t understand why they had to break up our table.” Seriously? She’s been upset on a daily basis about this upheaval, which was all brought about because YOU complained about her, F… but now you miss her? Good grief.

It Starts Now

Mom is having a hard time adjusting to the new table in the dining room. I was told she got very upset when they told her she was being moved and demanded to know why… but I thought she’d be fine with it as soon as she got acquainted with the new table mates. But apparently every day she forgets and tries to sit at the old table and then it’s upsetting all over again when they tell her she can’t.

When I dropped her off after her dentist appointment today, I learned that there was an incident at breakfast. Mom came down to the dining room in her pajamas and tried to sit at the old table. The Care Director headed her off, telling her that she has to get dressed before she comes downstairs and that she has to sit at the other table. The way the Care Director told it, Mom had a temper tantrum, slamming her walker into the table and raising her voice. She refused to go back upstairs and change out of her pajamas, but they did talk her into sitting at the new table. “I’ve never seen her angry like that,” the CD told me. Neither have I. One of the saving graces so far is that Mom has always been so good natured and agreeable, but I guess that’s about to change.

It’s clear to me that she’s entered a new phase in her dementia since her last hospitalization. The things that used to work, like reminders via phone call, are no longer effective. She’s not managing her activities of daily living (ADLs) without some assistance, so we’re going to need to pony up more money every month to have someone get her dressed in the morning, comb her hair and help her brush her teeth, escort her to the dining room for meals, and help her get into her pajamas at night. And I think I should start looking into whether there’s a Medicaid waiver that covers Memory Care facilities, or if that’s just for skilled nursing, because I have a sneaking suspicion the staff at her current place aren’t at all equipped to deal with advanced dementia.

This is it, folks. The hard part starts now.