Archive | March 2014

Thirty Days

Yesterday I gave our 30-day notice at Mom’s retirement community. I’m relieved to have found a much better place for her – a small board and care home with only six residents, where she will get the kind of attentive care she needs and deserves. She will have to share a room, but it’s the largest and best situated room in the house, with a private bath and a sliding glass door opening onto the beautiful fenced backyard. The owner of the home has been in this business for twenty years and she impressed me with her compassion and commitment to this work.

When I took Mom to see it, she said the home was beautiful and absolutely loved the yard and garden – but she said she didn’t want to move again. Understandable, since she’s already moved twice in the past 15 months. I gave her a few days, then broached the subject again, and I didn’t even get through half of my carefully prepared arguments before she agreed that the care home sounds like a good move. “This place is nice,” she said, “but it doesn’t feel like home.” I asked her if she wanted to take some time to think and pray about the decision before I gave her notice, but she said no – “this feels right.”

I’m so happy she’s on board, though I was prepared to take the decision out of her hands if I had to. The woefully inadequate care at her current facility was underscored by what happened Thursday night and Friday of this week. I called her on Thursday night around 9:00 p.m. She was really out of it when she answered the phone, not making a lot of sense. She told me that “they” (staff) had taken her someplace and just brought her back and got her ready for bed. When we hung up, I called the front desk and was told that staff had found her sleeping on one of the couches in the public areas and brought her back to her room. Considering that she almost never leaves her room after dinner, I can only assume that she stopped to rest on her way back from dinner (around 6:00 p.m.), fell asleep and was still there nearly three hours later. It is inexcusable to me that they could just leave her lying there all evening. There are cameras throughout the facility, so someone must have seen her. Concerned, I stopped by on Friday morning before work. I found her bedroom window wide open, the room very cold, and Mom huddled under every blanket she has, phone still in her hand from our call the night before. She was drenched in sweat and had soiled herself. Her medical alert call button was lying on the dresser, the button part having come loose from the necklace.

Let me count the ways this was unacceptable. All of them will make it into the complaint I file with the state licensing board the day after she moves out. I wish we didn’t have to wait 30 days. I wish I could move her tomorrow. But we can’t afford to pay for two rooms at once. So I’m just going to check on her daily, if possible, and be a thorn in everyone’s side to get her the care she needs. It will be an enormous relief to move her into a home where someone will actually CARE.

Nurse Ratched

I’ve been privately calling the Care Director at my mom’s place Nurse Ratched since one of the residents told me the place reminds her of the movie “One Flew Over the Cuckoo’s Nest.” It’s not an entirely appropriate moniker – for one thing, she’s not even a nurse – but being snarky about her inside my head helps diffuse my frustration with her. Sometimes.

This morning while we were waiting for my mom to see the doctor on his monthly visit to the facility, I overheard a conversation between Nurse Ratched and another resident’s son. He was asking to speak with the doctor for a few minutes privately before bringing in his mother because he didn’t want to bring up his concerns about his mother’s increasing dementia symptoms in front of her. Nurse Ratched seemed to be objecting to this, though I don’t know why she would. The son brought up an incident recently where his mother hadn’t recognized her favorite jacket, citing this as an example of a new type of confusion different from the short term memory issues he was used to her having.

“Well, you should have heard her the other day after you left!” Nurse Ratched said, in a tone best described as callous. “She was demanding to know who that nasty man was who was bossing her around.”

The son, sounding utterly deflated, asked quietly “She didn’t know who I was?”

Still in the same flippant voice, Nurse Ratched answered “No, she didn’t. She just kept complaining about how nasty you were, making her do things she didn’t want to do.” I thought I heard something almost gleeful in that tone, as if she was spitefully enjoying taking him down a peg.

I don’t know the background behind this exchange or any of the interpersonal dynamics in play with these people, but it made me flinch to hear the news that sometimes this mother does not recognize her own son delivered in such a cold-hearted manner. I dread the day when my mother no longer knows me, as I’m sure all family members of dementia patients dread that day. Is a little tact and compassion from the people we pay to care for our dementia patients really too much to ask?

It was already clear to me that this care director lacked knowledge about dementia – as evidenced by watching her shout at the poor old man who couldn’t remember how to swallow, as if he was just being stubborn and yelling “Swallow! Swallow!” in his ear would do the trick, and other similar incidents. Now I see that she’s lacking in compassion as well. I really want to get my mom away from Nurse Ratched and her poisonous attitude before she takes another cognitive decline.

In Her Own Words

Going through my mom’s papers, I found four typewritten pages that I quickly realized were her notes for a testimony she gave at a Community Bible Study. There’s no date on it, so I have no idea how long ago she wrote it… but about halfway through it begins to be a story that is very familiar to me, having heard her tell it over and over again ever since I was a child. If you have known my mother for very long, it’s probably familiar to you too. But for those reading this who haven’t met her, and just to preserve her story, I wanted to share it here. So here it is, in her own words.

“My mother, a wonderful woman and a committed Christian, went home to be with the Lord when I was 17 and a senior in high school. Alice was three, Tom was eight, and Bob was 16 years old. Two older brothers were in the Armed Forces. Shirley, age 19, moved back home to take care of Alice. For years to come, Shirley and I shared the responsibilities of cleaning, cooking, laundry and child-rearing. We had both accepted Jesus as our Savior about five years earlier, so God was always there for us. Our father was a wonderful man, quiet and reserved but loving and appreciative. We were a very close and loving family. When Alice started school, we could both work outside the home. Bob joined the Navy.

After about seven years of this, Shirley moved to Detroit for a career. And I wanted her to be able to do that. But – everyone my age in the small town of Leesville, Ohio had gone off to college, gotten married or moved away for better opportunities. My friends were older women in the church and a war widow who had a daughter about Alice’s age. By this time I was probably 25 years old and feeling like my life was passing me by. I might never get a good job or be able to go to college. I might even be an old maid! Mind you, I was still loved – and I felt loved – by my family. But I was beginning to feel trapped, sorry for myself, like a martyr – and I hated it!! My feeling was, if you’re going to do something nice, do it with a loving spirit or don’t bother. None of this “poor me” garbage!

I remember that I was trying to sleep one night and I just felt SO desperate that I prayed “God help me!” with every fiber of my being. And He did. It was a miraculous, instantaneous answer! God’s Spirit filled me with JOY! It was a beautiful, blessed gift from God and the only immediate answer to prayer that I have ever received. If I had any lingering doubts that there is a God who hears and ANSWERS prayer, they were gone forever. It’s a very good thing that I didn’t try to tell God HOW to help me, because I NEVER could have imagined anything as glorious as this.

Now, nothing in my outward circumstances changed. Alice couldn’t grow up overnight; my family still needed me. But these same circumstances no longer had the same impact on me, because I was changed – bubbling up and overflowing with God-given joy! More importantly, perhaps, I was no longer worrying. I was trusting God. And God is completely trustworthy!

Several years later, I did get to go to college. I got a degree and worked as a speech therapist. I did get married, and I have a wonderful husband! When hard times come (like being diagnosed with Lupus), God is always there to comfort and sustain. God CAN change our circumstances by changing us – changing our attitudes and our perspectives. If we can’t do or feel what is pleasing to God on our own, we just need to ask God to help us, to do His work in us. And He will.”

A Typical Day

Yesterday was a long day for me. I left home at 6:45 a.m. to go to my paid employment, then headed to my “second job” as Mom’s caregiver at her assisted living facility. I didn’t get home until about 8:30 p.m.

Somehow, in spite of me reminding the AL staff, Mom missed her weekly appointment at the on-site beauty salon. This is happening so often, it frustrates me. Her room is only a few doors down the hall from the salon, and yet they can’t manage to get her there for a standing appointment? She won’t let them wash her hair when they give her showers (because she doesn’t want to lose her set), and the beautician is only there one day a week – so unless I take her out to a salon, now she’s going to go two weeks without getting her hair washed. It’s a small thing in the grand scheme, but it’s aggravating.

Her blood pressure has been higher than normal the last few days and she still has the edema (swelling) in her feet and ankles, despite some extra doses of Lasix. She was shuffling along even more slowly than usual as we came back from the dining room. I spent a few minutes talking to the facility administrator about these concerns, then spent some time installing her new phone and getting her to practice answering it.

I noticed a faint urine smell about her but her clothes appeared clean and dry. It took me almost an hour of gentle nudging to convince her to use the restroom and change her Silhouettes panties (by Depends), which sure enough were wet. Once she got her pants off, though, it was easy to convince her to change into pajamas. I did my usual sweep of the room, tossing dirty clothes into the hamper and laying out clean clothes and a clean pair of Silhouettes for the morning.

I read her daily devotion out loud to her and we talked a little bit about it. We also talked about her sister coming to visit in a month. She was in good spirits.

Overall, it was a good day. Just long. I can’t imagine how I’d manage if she lived with me! At least I could come home, put my feet up and have a glass of wine.

Out of the mouths of…

I was sick for a few days, starting on Thursday. I managed to go to work Friday but spent pretty much all weekend in bed. I suspect the chronic stress and sleep deprivation from caregiving are doing a number on my immune system. Anyway… Monday I stayed home from work so I could take my mom to the podiatrist in the morning and get more rest. Went over to the ALF to visit (and help her get ready for bed) in the evening.

Yesterday I went back to work, but I was tired enough by the time I got home that I didn’t try to go see Mom. I just called to check in by phone. She asked how I was feeling and I told her that I was getting better, just really tired.

“The thing you have to remember,” she said, “is that it’s important to take care of yourself first. If you don’t take care of yourself, you’re no good to anyone else.”

Wise words. And what a gift to hear them from her, of all people.