Tag Archive | elderly parents

The Final Chapter (Part 2)

“I see my end in sight,” she said.

It was Friday morning, a little before 10:00. She had been sleeping when I arrived back at the care home an hour or so earlier, and the new hospice nurse on duty told me that Mom  had thrown up twice and so the nurse had given her something for the nausea along with Ativan to slow her respiration. Her breathing was visibly slower and easier, and she seemed to be resting comfortably. The nurse had just finished giving me her update, and I sat down and pulled out my colored pencils and the picture I was working on, when Mom woke herself up coughing and then started to mumble. I went to her side, brushed her hair from her forehead and leaned over to give her a kiss. I couldn’t understand most of what she said, but she looked right into my eyes for a moment and her voice was clear when she said “I see my end in sight.” I knew that was a moment of lucidity, and I knew the time was short.

Mom’s  sister, Alice, had wanted to call and talk to her before we left the SNF but Mom was too weak. I worried aloud that Alice wouldn’t get another chance to talk to her. The nurse, a gentle Pakistani woman with kind eyes and a lovely accent, told me that hearing is one of the last senses to go and we should keep talking to Mom even after she stops being able to respond because she WILL hear us and be comforted by our voices. I texted my aunt about this, suggesting that I could put the phone on speaker and set it on her pillow. When Alice’s familiar voice said “Hi Dot, it’s Alice,” Mom opened her eyes and looked around. I could tell she was listening to everything Alice said and when her sister said “I love you,” Mom replied just above a whisper, “I love you, too.” With her voice breaking only a little, Alice opened her Bible and began to read from Corinthians 13, the verses that end with “And the greatest of these is love.” Mom drifted back to sleep as she read. It was beautiful and heartbreaking.

The last words my dad ever said to me, in a  phone conversation two weeks before he died, were “I love you, too, sweetie.” It wasn’t something he said to me very often, and I have cherished that memory. I was  grateful that Alice got to hear those words one last time from her big sister.

A little later, when the nurse had stepped out of the room, I stood by Mom’s bed and told her that I know my dad is waiting for her in Heaven. “… and your brother Bill and your brother Tommy and your sister Shirley… and Fritz and Bob and Marilyn. They’re going to be so happy to see you again! I’ll bet they throw a big party to celebrate your arrival, with singing around the campfire.” She didn’t stir, but I trust she heard me.

I’d been feeling my dad and two of Mom’s brothers, Bill (the oldest) and Tom (the youngest), around her bed since she was at the SNF, even before we got the end stage diagnosis. Mom always said that Bill was “the best big brother in the world,” that he always looked after and protected his younger siblings, so of course he’d be looking after her now.  At random moments, while sitting beside her bed or making the arrangements for hospice, I’d see my Uncle Tom’s smiling face or just get the reassuring sense of his quiet strength. One night after I left the SNF in tears of anxiety, I got a clear mental picture of my dad dozing in a canvas camp chair beside her bed. The message was clear: Go home and get some rest. I’ll stay with her. I knew they would all stay with her through this transition and be waiting with open arms to welcome her into the next world.

That night I helped the hospice nurse give her a sponge bath and change her into a fresh diaper and a clean, soft t-shirt (cut down the back so we wouldn’t have to pull it over her head). The nurse was so careful and gentle, but Mom still kept murmuring “Ouch ouch ouch” whenever we moved her. At one point, when the nurse lifted her knees, Mom said loudly “Ouch! Stop it!” We smoothed lotion over her skin, and the nurse cleaned her mouth with a swab, and she was resting comfortably when I left to get a few hours of sleep.

(Later, I would realize that my mother’s last words were “Stop it!” and make half-hearted jokes to cover the hurt. I would remind myself that she didn’t need to tell me she loved me one last time because we had said that to each other many, many times during her last days and weeks. She knew that I knew. Later still, I would realize that she hadn’t even been aware of who was touching her when she reacted to it – she wasn’t telling ME to stop it. The last thing she said to me, to her daughter, was “You’re a good girl.” I can hold onto that.)

Saturday morning, she was visibly worse. Her breathing was once again labored, chest heaving with every breath, even though the oxygen had been turned up to 6 liters. She was non responsive, and the new nurse on duty told me that “she could go at any time now.” She asked if I wanted hospice to send a chaplain and I told her no, I’d ask for someone from her church to come. I emailed the pastor’s wife, who had come twice to visit Mom in the SNF, and she quickly responded: We’ll be there within the hour. I sat by Mom’s bed, praying that both my sister and the pastor would get here before it was too late, tears streaming silently down my cheeks.

They did arrive in time. My sister got there first, and I asked the nurse and the care home administrator (who had stopped in to check on things) to leave the room and give her some private time with Mom. Then the pastor arrived and prayed with her and read something from the Bible that talked about angels carrying us to Heaven on their wings. After the pastor and his wife left, my sister and I stayed by her bed for a long time, gently stroking her arms and talking to her about everyone who is waiting for her in Heaven.

The hospice nurse must have told the administrator that the time was close. The staff set up a bed for Mom’s roommate in the TV room, so that I could sleep on her bed and stay with my mom. My sister took a nap there, while I journaled and colored, and then we ordered some food delivered. I went home briefly to pack what I would need for overnight and feed my cats. Then I called an Uber to take my sister to her hotel, since she’d had a very long day on very little sleep.

I was sitting on the other bed, sipping some wine I’d brought in a Mason jar and contemplating whether I should try to get some sleep, when the nurse suddenly stood up and went to stand beside Mom. “It’s OK,” I  heard her say. “You can go.” I was instantly on alert, and I went to the other side of the bed and began gently stroking Mom’s arm and her forehead. “Your daughter is going to be fine,” the nurse continued. “Don’t you worry about her. There’s nothing you need to worry about now.” She nodded to me, and I started to talk.

I told her again about all the family who are waiting for her, about singing around the campfire again like they always loved to do… I reminded her what the pastor had said about angels carrying her on their wings to Heaven. “You’re not going to have to struggle or work to get there, Mom. They’re going to carry you on their wings. All you have to do is let them.” I told her that I love her so much and that I’m going to miss her, but I’m strong and I’m going to be fine — and I’m happy for her that she’ll be reunited with beloved family and won’t ever hurt again.

And while I was saying these things, she was breathing… and then, she wasn’t. It was so gentle and subtle, I might not even have noticed if the nurse hadn’t drawn my attention to it. I gave Mom one last kiss and told her to hug Dad for me when she sees him. At 11:46 p.m. on Saturday, September 22, her story came to an end.

 

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The Final Chapter (part 1)

The final chapter of her story began on Tuesday, September 18, when the nurse practitioner came by mid-morning. “We need to talk,” she told me, motioning for me to follow her out of the room. My heart was in my mouth as I followed her into the lobby and sat down on one of the leather sofas. The lab results showed that my mother was no longer in stage IV chronic kidney disease — the illness had pushed her into end stage, which meant her kidneys were failing.  The antibiotics had also failed to clear the pneumonia from her lungs. The NP told me that they could try IV antibiotics for the pneumonia, but it would mean keeping her at the SNF for 4-6 more days and she wouldn’t necessarily recommend that.

I shook my head. “No. I want her to go home.” We talked a bit more and agreed that the best plan was to send her home to her board and care home with palliative care. The rest of the day was spent talking to different people about hospice care options and getting things in place, so she could go home as soon as possible. I didn’t want to use the “H word” in front of her, so I talked about it as home health care. Every time I said something about going home, she would smile and say “Good!”

Whenever I needed to leave the bedside even for a few minutes, I would ask her if she needed anything before I stepped away. One time when I asked that, she replied “Nothing you can give me.” With a smile in my voice, I asked lightly, “What would you ask for if I could give it to you?” Her answer hit me like a punch in the ribs: “Freedom from pain.” I kissed her forehead and told her she was right that I can’t give that to her, but God can and we can pray for that.

Wednesday I signed the paperwork with the same hospice company that is caring for Mom’s roommate, and we arranged for a Thursday discharge. I don’t think she ate anything solid on Wednesday, but she did drink two Boost shakes over the course of several hours. I stayed with her until 10:00 p.m., to see that she was clean and comfortable before I reluctantly left to get some sleep. At that point I still thought she’d recover some ground once she got home to a safe, familiar environment. I thought we might be on a palliative plateau for weeks or months.

When I arrived at the SNF around 7:00 a.m. on Thursday, her breathing was so labored it frightened me. Her chest heaved with every breath and she had spasms of coughing that made her whole body shake. After one of these spasms, she looked at me and said grumpily, “This isn’t worth it.” She was too weak to try to eat, but she thought the orange juice looked good. I gave her two sips and she promptly vomited all over her pajama top. I pressed the call button, a CNA arrived to help get her cleaned up, and we gave her some water to rinse out her mouth. “My body doesn’t feel right,” she told me.

I found some worship music on Spotify, songs that Mom would recognize from church, and put my iPhone beside her pillow.  I sat beside her bed crying silently and praying the same three-word prayer over and over: NOT YET, GOD. Overnight I’d gone from expecting that she would get better, at least temporarily, to frantically praying that we could get her home before she slipped away. I couldn’t let her die in that nursing home.

The transport arrived at 1:00 p.m. to take her home.  I walked beside the stretcher to the ambulance, kissed her goodbye, and told her I loved her and would meet her at home. When they wheeled her in to her familiar room through the sliding glass door from the back porch, I was waiting for her. Mom was awake and coherent. “Do you recognize this room?” I asked her. “It looks a little familiar,” she murmured. Then her eyes fell on my dad’s picture in a frame on top of the bookcase and she smiled. “There’s Bob’s picture!” I squeezed her hand.  You’re home now, Mom. Everything is going to be OK. She must have sensed that because, almost as soon as we got her into the newly delivered hospital bed, she seemed to relax and was breathing more easily.

The hospice worker who did the intake told me they would be providing 24/7 nursing “due to her change in condition.” The first nurse arrived around 5:00 p.m. to take the night shift, and I was able to go home to feed my cats (and myself) and call my sister, who had arranged a week off work and booked an early morning flight on Saturday. Then I went back to sit with Mom. She was awake when I got back because she’d thrown up again and the caregivers had to get her cleaned up and change her nightgown, but she soon dozed off again. The nurse had given her a low dose of morphine (“comparable to taking Tylenol with codeine,” he told me) for her pain, which made her drowsy.

I decided around 10:30 p.m. to head home and get some sleep, so that I could spend more time with her when she was awake. She’d been sleeping peacefully most of the evening, but a coughing fit woke her briefly. I moved to her side, squeezing her hand and kissing her forehead. She looked into my eyes and smiled weakly. “Good girl,” she whispered. “You’re a good girl.”

Last photo 9-20-18

 

 

 

Thirty-Six Hours in a SNF

Wednesday morning I learned they would be discharging my mom from the hospital to a skilled nursing facility (SNF) later that day for “a few days” of rehab. I had already made the decision to cancel my trip to San Antonio, so I asked the discharge planner to look for facilities near my office location rather than have her sent to the same horrible place she went the last two times just because it’s close to home (and the owner of the board & care would visit her there). The discharge planner sent me three possibilities to research. I ruled one of them out based on their ratings and reviews, but both of the other two looked like they would (at least) be better than the last place. The decision was made for me when only one of those two had a bed for a female available. I felt pretty good about it. The facility is on my way home from work, only a couple minutes off the freeway, and while reviews are mixed, it gets solid ratings from Medicare and other agencies.

The transport that was ordered for 5:00 p.m. didn’t arrive at the hospital until 6:30, so Mom was able to eat a little bit of dinner first. She was in pretty good spirits and definitely seemed to be improving. I hoped that it really would be just for a few days. Maybe she’d be back at the board and care by Monday, even. As I was standing around while the medical transport guys were getting ready to load her on the gurney, one of my favorite CNAs came in to say goodbye to Mom. She reminded me of a friend of mine in Portland (if that friend had candy red hair) and she’d been really great with Mom. The stress must have been written all over my face because she took one look at me, said, “Oh honey” and put her arms around me.  And maybe it was because she reminds me of my friend that I didn’t hesitate to let her hug me. It felt so good to be seen, to be held.

We got to the “4 star” facility around 7:15 p.m. It looks pretty much like the other nursing home (they must all be built on the same basic floor plan), but it’s a bit older or hasn’t been upgraded as recently. Instead of individual TVs for each bed, there are two TVs mounted on the far wall for the room of three. Mom didn’t get a TV (or a remote for the one she can see from her bed), but at least she got the bed by the window. The medical transport guys got her into bed and comfortably propped up on pillows, someone brought an oxygen machine and they got her switched to that from their portable tank, and then they left… and we waited. And waited. No one came in to assess her or have me fill out any paperwork. After an hour, I went to the nearest nursing station to ask. The harried charge nurse gave me the paperwork and tried to tell me that both the flu and pneumonia vaccines are needed every year and Mom should get them while she’s there. Wrong. The pneumonia vaccine is good for five years. Mom got it last fall and, even if she hadn’t, a nurse friend confirmed to me via text that it’s medically inadvisable to give the vaccine while she’s recovering from pneumonia. Good grief.

It took TWO HOURS for the nurses to even come into her room to assess her, and I’m convinced it would have been longer if I hadn’t made it quite clear to the charge nurse that I wasn’t going anywhere until that got done. And, of course, when they did the body check, she was soiled. To put it more bluntly, she’d been lying in her own shit for who knows how long until they finally got around to her. I was NOT happy. And even less happy when I learned that they wouldn’t have any of her medications except the antibiotics until morning because their pharmacy doesn’t deliver after a certain hour.  There wasn’t anything I could do about it, and she was finally clean and ready to get some sleep, so at 10:00 p.m. I finally went home, feeling like this was going to be a disaster.

I had told my boss that I’d be in late, after I stopped by the SNF to do the admissions paperwork and check on Mom, but I slept so poorly and was so worried about the situation that I knew I just needed to call off for the day. I got over there about 9:00 a.m. and it was a much more cheerful place in the morning. The day shift charge nurse was much more responsive, they now had all her meds, and the dietician came around to talk about her dietary needs and preferences. The one thing I was still concerned about was that they didn’t seem to have the orders for IV fluids, which I’d been told was the main reason they couldn’t discharge her home to her board and care. I was told that the nurse practitioner would be in later that morning and would take care of it.

The nurse practitioner is awesome, and talking with her restored some of my confidence in the placement. She listened to my concerns and we seemed to be on the same page about what is and is not acceptable in terms of care. She confirmed the IV order with the hospital PA and got that started within an hour of examining Mom. The x-ray and blood draw for labs she ordered also happened that same day. Two physical therapists came to do a preliminary assessment on Mom, and they got her up in a wheelchair and wheeling herself around (which she’s never done before because the chair we have is a transfer chair). She seemed to enjoy doing that and it’s good exercise for her arms, so I resolved to find a way to get her a regular wheelchair when she gets home.

After spending most of the day with her, I left around 7:00 p.m. to get some dinner and rest. “Go,” said Mom with a smile. “Take care of yourself. You need to have a life too.”

The hospital had scheduled a follow-up with the nephrologist for Friday, but the NP and I both agreed that she wasn’t quite ready to be taken out to an office visit, so I got it moved to Monday afternoon. A case manager from Mom’s medical group called me to arrange the wheelchair van to take her to the appointment, which was something else the nurse practitioner had told me she would make happen. (Clearly this woman gets shit done. I respect that.)

I went back to work on Friday without worrying about Mom, though I was frustrated to realize that I couldn’t call her. There are no phones in the rooms and they don’t even bring a cordless phone in for patients who are on bedrest. The only way for a patient to get a phone call is to have their own cell phone — which, frankly, I would worry about getting lost or stolen, even if Mom had one — or go to the nursing station to take a call there. Ridiculous, if you ask me.

But when I got to Mom’s room around 4:30 p.m., she was a lot less perky than the day before. In fact, she was so weary that she could hardly keep her eyes open. “I may fall asleep on you,” she told me. “The only time I feel comfortable enough to sleep is when you’re here.” I held her hand until she fell asleep and let her nap until they brought the dinner tray. Despite what I thought were clear directions to the dietician, they persist in bringing her food that is impossible for her to chew with dentures. (I mean, come on, tortillas can be hard to bite through even when you’ve got your own teeth!) Thankfully, I had stopped at the grocery store and picked up a few items to supplement the bad facility food. Mom ate half a banana with some peanut butter and a few bites of applesauce, and that was dinner. She dozed off again as soon as she’d finished eating, even while sitting up at almost a 90 degree angle. I hung around until 7:30, but she never did wake up again for more than a few moments at a time, so I finally kissed her goodnight and went home for some self care.

Day three at the SNF was not a good day. I had let myself sleep in a little, then stopped at the pharmacy to fill a prescription and picked up some lunch to bring with me, arriving just before 11:00 a.m. Mom was asleep in her pajamas, and she barely woke up enough to acknowledge my presence. Despite the IV fluids, her mouth was so dry that she could hardly talk — but she was so weak, she didn’t even want to let me raise the head of the bed to give her water. “Just leave me alone,” she kept saying. “Let me sleep.” When they brought the lunch tray, I took a glance at the entrée and knew that (again) there was no way Mom could eat it.  “Try to get her to eat,” the CNA told me. “She didn’t want any breakfast.” But it was no good. I couldn’t even tempt her with chocolate pudding. I finally got her to take enough water to wet her mouth before she fell into a restless sleep again. I was really worried about her, wondering what had happened to set her back so far when she’d seemed to be on the mend.

She slept all afternoon and by dinner time was starting to seem a little more like herself, though still extremely fatigued. She even showed an interest in the meal, which was some kind of turkey sandwich with sweet potato fries, but after chewing and chewing at the same piece of turkey until her jaw was tired, she spit it back into her napkin and gave up. I managed to get her to eat one sweet potato fry, one bite of strawberry, three bites of applesauce, and three bites of chocolate pudding. I decided to stay with her until they came to clean her up and get the bed ready for overnight, and I’m so glad I did.

Only one CNA came to clean her (usually there are two), and she wasn’t very gentle or compassionate. She would have just flipped Mom onto her side if I hadn’t stepped up, taken Mom’s hand, and helped her roll over more gently. I ended up assisting through the whole process, even handing the CNA the IV bag so that she could pass it through the pajama sleeve and then back through the sleeve of the hospital gown the changed her into. I don’t mind helping AT ALL, but I shouldn’t have to. If I hadn’t been there, it’s not that I think Mom would have been mistreated, exactly… but it would have been a lot more unpleasant for her. Even with me there, verbally reminding the CNA that abraded sores on her backside are extremely painful, she scrubbed at Mom’s behind with a washcloth until Mom yelled and I grabbed the wet wipes the hospital had sent home with me and pushed one into her hand to use instead.

And that was how our first 36 hours at the SNF ended. Mom was tired and irritable, but clean and comfortably tucked into bed when I left around 9:30 p.m.

Dear Dad…

Dear Dad,

It’s been almost 11 years, and I don’t know that I’ve ever missed you more than I do right now. I’m writing this in a chair beside Mom’s hospital bed. She’s been in the hospital for four days, as I suppose you know, and she doesn’t seem to be improving yet. In fact, there’s been a new complication every day. I sure wish I could ask you what to do.

She’s having trouble eating. She ate pretty well on Saturday (after two days of keeping down nothing but liquids), but on Sunday she had no appetite at all and had to make an effort to take a few bites. A couple of times she muttered wearily, “Gotta eat to stay alive.” It reminded me of the last year or so of your life, when you had to take in all liquids through a feeding tube because otherwise you aspirated into your lungs, and how you used to talk about all the hours you spent in a day “just staying alive.” I remember when you asked me to find that Bee Gees song, and I decided to make you a whole CD of music I thought you’d like, including “Stayin’ Alive”… but I didn’t finish it in time. Sorry about that, Pops.

Anyway, back to Mom. She ate almost nothing yesterday, and when I was there at dinner I discovered that the issue was more than having no appetite or feeling too tired to make the effort. She couldn’t seem to remember HOW to eat. She let me spoon feed her a little bit of pudding and I think that was all she ate all day except for a Boost shake at lunch. This morning I fed her breakfast and she actually seemed interested in the food for the first time, telling me “Now the applesauce” or “Give me a bite of that yogurt.” But when she tried to feed herself, she was missing her mouth and dribbling food down her chin. What does this mean, Dad? Is it going to get better, or is this where we are now?

I wish you could tell me what it means that Mom is “dreaming with [her] eyes open” and talking to people who aren’t here. A couple of times she’s seen someone in the room. I don’t know if it’s just the multiple infections, or a side effect of one of the many medications, or if she’s starting to see between the worlds. She hasn’t mentioned seeing anyone who I know to be on your side of the veil yet, which is a comfort to me. I’m not quite ready to let her go. You’ll have to wait a little longer for your dance partner, OK?

* * * *

LATER: I put this aside to help Mom, and then they brought her dinner tray. I started feeding her some mashed potatoes and gravy, and after a couple of bites she said, “Let me feed myself!” She moved slowly and a little clumsily, but she didn’t miss her mouth this time. She ate some mashed potato, a couple bites of the fish (too tough), some applesauce and some pudding. And when she’d eaten all she could, she actually picked up the word search puzzle book I brought her for the first time. She didn’t do more than flip through the pages and put it down again, but it’s an improvement. I feel much more hopeful than I did a few hours ago. If you had anything to do with that, Dad, thank you.

One more thing, Dad… I wish I could have seen your reaction to the smug know-it-all hospitalist, though I’m pretty sure I know what it would have been. His behavior was just like the surgeons you used to complain about at the dinner table back when you were an anesthesiologist. I wanted you here to put him in his place when he was so condescending and dismissive to the nurse who had been so wonderful with Mom. No wonder the nurses at Franciscan appreciated you so much.

I have to get some sleep now. Thanks for keeping an eye on Mom. I love you.

Dad Sleeping

If it’s not one thing…

… It’s another, as Gilda Radner’s SNL character used to say. It’s always something!

I had a really lovely weekend planned for myself, with a restorative yoga class on Friday evening, a planning meeting for a nonprofit I work with on Saturday, gardening and a women’s circle on Sunday. But Friday morning I woke up to text messages from the owner of Mom’s care home.

Mom had vomited three times on Friday, the texts said. She had a low grade fever (99.0) and had some diarrhea. It sounded like a typical stomach bug to me, but I told her I would call the primary care doctor as soon as his office opened. I called and left a message for the nurse to call me back. I checked in with the head caregiver a couple of times before lunch, and Mom was now keeping down liquids (and half a banana for breakfast) and her temperature was back to 98.7, but the diarrhea hadn’t stopped. They were concerned about dehydration. I called the nephrologist to ask if we could give her Pedialyte (answer: no, too much potassium for someone with chronic kidney disease) and got some good advice from the nurse. The primary care nurse still hadn’t called me back when I left the office at 4:30 p.m. I still thought it was just a stomach bug, and it sounded to me like the worst was over.

Shortly after 5:00 p.m. I got another text from the owner of the care home. She said the diarrhea had gotten much worse and her pulse was very rapid. She wanted to take Mom to the emergency room. Let me call her doctor again, I said. I called, got the nurse on the phone this time, and she confirmed that an ER visit was the way to go. When I arrived to pick Mom up, it was clear to me that she was very sick indeed.  So we spent Friday evening in the ER. They got her started on IV fluids, did an EKG and a CT scan, and drew blood three different times for labs. She was experiencing atrial fibrillation and her blood pressure was the lowest I’ve ever seen, around 105/51. I’m afraid it was a pretty miserable few hours for her, more so than most ER visits have been. Everything seemed to cause her almost unbearable pain, from the blood draws to the catheter to cleaning up the diarrhea that has caused a painful rash on her backside. Her face was as pale as I’ve ever seen with a yellowish cast to it.

The ER doctor suspected a C Diff infection, which is pretty worrisome as that can be very serious for the elderly. So they had to collect a stool sample for testing, which was more difficult than you might imagine, and started the admission process. It was 1:00 a.m. when they finally came to take her to her room, and 2:00 by the time I left to get some sleep.

Thirty-six hours later, we still haven’t gotten lab results to confirm or rule out C Diff… but she does have a UTI and pneumonia in her right lung (upper and lower). She’s still having some fibrillation, and they suspect a mild GI bleed. No wonder she was so sick! That’s a lot of issues for one frail 90-year-old.

I got to talk to the attending physician this morning, and based on her improvement since Friday night he doesn’t think she has C Diff (whew!), but they can’t plan for discharge until the labs rule it out definitively. They started her on three antibiotics — one for the diarrhea, one for the UTI, and one for the pneumonia. The diarrhea had stopped by midday yesterday, and she’s got some color back in her face and even a little appetite now.  If the test comes back negative for C Diff, she’ll likely be discharged tomorrow.

Unfortunately, I think the likelihood is they’ll send her to a SNF for rehab for at least a week. And I am flying to San Antonio on Thursday for a long weekend co-facilitating a retreat. I hate the idea of her being in one of those places when I can’t be here to check on her, so I’m already thinking about who I might be able to line up for check-in visits for those four days.

The surprising thing is that my anxiety hasn’t shot through the roof. I’ve been fairly calmly readjusting to each new development, concerned but not panicked. That feels good. One day at a time…

This is a hard part

I’ve been procrastinating blogging because I had wanted to share the story and photos from Mom’s 90th birthday party in June, but first I was too busy getting ready for my annual retreat… and then when I came back, I got a shock that I’m still trying to figure out how to deal with.  It’s been so stressful for the last six weeks, I just can’t get myself into the right frame of mind to write a cheerful birthday post. I promise I will, eventually. Right now, I need to get some of what’s been happening off my chest.

The shocker: The owner of the care home called a meeting with me the first week of July to discuss “the level of care for your mother.” I walked into that meeting with my stomach in knots and the adrenaline rush making me almost dizzy. I was afraid she was going to tell me that Mom needs to be in skilled nursing and we’d have to move her. Thankfully, that didn’t happen. She outlined all the ways in which Mom’s care needs have increased in the four years she has lived there (without there ever being an increase in the charges) – from walking with a walker to wheelchair bound, from partially incontinent to fully incontinent (both bladder and bowels), the number of medical appointments they’ve been taking her to, and finally, behavioral changes.

She had mentioned a couple months ago that Mom sometimes gets agitated when the caregivers are trying to get her to do something she doesn’t want to do (e.g., toileting or get out of bed in the morning) and strikes out, slapping their hands away or even pinching them. Apparently this is only getting worse and she’s even started spitting on the caregivers. I was floored, to say the least. Here I’ve thought we were so fortunate that Mom hasn’t had the kind of personality change that is so common with dementia patients, but apparently I just don’t see it. I’m like the non-custodial parent, who comes in once a week to take the kids out for ice cream and a movie. I’m not the one who has to enforce rules, make her take her pills, etc. “She is totally different when you are around,” the owner told me.

The bottom line is that they need to increase the monthly charges so that she can cover her increased staffing costs. I understand that and it’s not unreasonable at all, but the amount by which they are increasing is problematic for us, to say the least. Right now the amount Mom pays to the board and care each month is within $10 of her monthly income from social security and my dad’s VA pension. The monthly cost is going up by $500. I have no freaking idea where that money is going to come from. Also, re: the behavioral issues, the owner asked me to talk to her doctor about prescribing some kind of medication to “keep her calm.” I’m afraid that if we don’t do that, she might tell us that Mom has to move.

Mom got referred to a new neurologist (because Dr. O is no longer part of her insurance network), and I asked him about prescribing something to help with the agitation/aggression, but since this was his first time seeing her, he was reluctant to do that and told me to talk to her primary care doctor. I brought it up with the primary care nurse at her most recent visit, but didn’t have a chance to talk to Dr. G when Mom wasn’t present. (And there was no way I was going to discuss her spitting on the staff in front of her — she’d be horrified, and she’d never believe she does anything like that.)

Meanwhile, she’s had a cough with chest congestion on and off since late June. When I visited her on July 4 after 9 days away, I learned her oxygen saturation had been dropping into the mid-80s and they were giving her supplemental oxygen. I called her primary care doctor and he ordered a chest x-ray, which was done on July 6 and showed “a little fluid in her lungs.” Long story short, after a visit to the pulmonologist and another visit to the primary, she is still coughing and the one thing they prescribed (albuterol in a nebulizer) seems to help the symptoms for a while but doesn’t stop it. I am both concerned and starting to get really frustrated.

I don’t write much here about what’s going on in my own life, except as it relates to being a caregiver, but here are a couple of things that have happened in the last year. On September 1 of last year, I was laid off from my job after almost 7 years in that position and a total of 13 years with the company. I got a good severance package, so I wasn’t too worried at first and I was grateful to be able to take time off to devote to Mom’s care. I started job hunting in January, never imagining it would take so long to find a job. Then in April, I got really sick with a flu that turned into pneumonia. I spent two weeks in bed and another two weeks slowly regaining my strength. And because I was sick in bed, I missed out on the opportunity to interview for a job that I think would have been a perfect fit for me. I did finally land a temp-to-hire position through a temp agency, which I started in early May. But it pays about 2/3 of what I was making at my old job, so my monthly paycheck doesn’t even cover all of MY regular expenses, much less allow me to subsidize Mom’s care to the tune of $500/mo. Most of my severance pay is long gone, and I’d been holding onto what is left in the hopes of paying off one of my substantial credit card bills. But unless I get a better job in the next couple of months, I’m not going to be able to avoid spending the last of the funds just to keep the bills paid. And I have no idea what we’ll do when my savings runs out.

So, yeah, it’s been a little stressful.

The one bright spot on the horizon right now is that I’ve applied for Medi-Cal (California’s version of Medicaid) coverage for Mom, and an eligibility specialist who did a review for us has assured me that she’ll qualify for the full coverage without a share of cost. Medi-Cal won’t pay for board and care costs, only for skilled nursing, BUT they will cover all her prescriptions and co-pays and her monthly premium for Medicare Part B, which would give her about another $125 a month.  And if they will pay for incontinence supplies, that would help even more. It’s not enough, but it’s something. And in the event that she does eventually require skilled nursing, we will at least have that option. Though I HATE the idea of her living in some horrible nursing home like the place she’s been after her hospital stays, and I will do everything in my power to keep that from happening. And I also hear that it can take months to get a Medi-Cal bed in even a mediocre nursing home, so it’s not an option in the short term even if we wanted it.

Well, I have to wrap this up now so I can take Mom to get a chest x-ray. The last round of labs showed an elevated white blood cell count, which may indicate an infection, but Dr. G didn’t want to prescribe antibiotics without first getting a chest x-ray. I’m hopeful we’ll get to the bottom of what’s causing this chronic cough soon and that there will be something they can do to treat it. I’m trying to stay hopeful about the financial situation too and trust, as Mom does, that it will all work out. But that’s a lot easier said than done. If anyone has any advice on that front, please feel free to comment here or email me, if you have my email. Thanks for listening.

 

Trouble with Names

I spent a couple of hours with my mom this afternoon. When I arrived, I found her slouched down in her recliner, knees tucked up, reading a book. It’s the first time I’ve seen her even pick up a book in months. The last time I visited, I cleared a tottering pile of books and magazines off the little folding table next to her chair; taking the books back to the bookcase in her bedroom and discarding the old magazines. I’m glad now that I left her a couple of books by her chair, as it was one of those she was reading.

She asked how I’ve been, so I talked about my new job… and then I switched to sharing family news. I mentioned that Sarah is in Colorado this weekend because Ashley graduated from high school on Saturday, pulling out my phone to find an Instagram photo of Ashley in her white cap and gown with her older brother Josh. Mom looked at the photo blankly. “Who are they?” I explained that these are two of her grandchildren, and Mom shook her head. “I haven’t seen them for so long,” she said. I declined to mention that she saw Ashley just three weeks ago. With her memory, even yesterday can be long forgotten.

What took me by surprise was her reaction to Sarah’s name: “And Sarah is who, again?” She’s seen a lot of Sarah the last couple of years and always lights up when her oldest granddaughter comes to visit or joins us at church. I gently reminded her that Sarah is her oldest granddaughter, the one who goes to church with us sometimes. Mom nodded. “I’m having trouble with names lately,” she said. I squeezed her hand. That’s OK. It happens.

She’s also apparently having trouble sleeping. One of her caregivers told me that last night Mom sat up around 11:00 p.m. and rang the bell by her bedside, saying she couldn’t sleep and wanted to get up and read. So they brought her out to her recliner and she sat up and read until 6:30 this morning! Then they gave her breakfast and she finally went back to bed and slept until 11:00 a.m.  I asked Mom if she’s been having trouble sleeping and she said yes, just lately. “There was one time when I didn’t sleep for 30 hours!” she told me. “I was up all day and all night and half the next day before I finally fell asleep.”

I don’t know if the 30 hours part is true — that’s the kind of thing I would expect the owner of the care home to notify me about — but I’m going to call her primary care doctor tomorrow and see what he suggests. I’m hoping there’s something over the counter that she can take safely for occasional sleeplessness, because it will be July before I can get her in to his office.

As for the names thing… I’m just thankful she still recognizes people when she sees them in person, whether she knows their names or not.