Tag Archive | dementia care

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

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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.

 

Breaks My Heart Every Time

There’s a new resident at my mom’s care home. I’ll call her Jenny. The first couple of times I met her, she seemed so together – introduced herself, remembered on my next visit that I was Dorothy’s daughter and she’d met me before, asking my mom how it went at the doctor when we returned from an appointment – that I almost wondered why she needs to be in board and care. She walks with a walker, but (like my mom) seems to get around really well with it. I was happy that my mom would have someone at the house to chat with besides the caregivers, who are really kind and engaged but too busy to just sit and visit with her.

Then one time when I brought Mom home from an appointment, Jenny said to me “I know you! You live next door to Bert, don’t you?” I shook my head. No, sorry, you’re thinking of someone else. “But I know I’ve seen you there,” she insisted. “I know you!” I told her again, you’re thinking of someone else. I don’t know Bert. Mom spoke up then, saying, “This is my daughter. You’ve met her before.”

Jenny may get confused about who I am, but she always seems happy to see me when I come in. Whoever she thinks I am, I’m glad that person is someone she likes.

This afternoon when I brought Mom home from church, Jenny met us just inside the door. “Will you do me a favor?” she asked me. I was busy helping Mom, who had taken off her sunglasses and was asking for her regular glasses from her purse, so I didn’t respond. Jenny was saying something about someone she hadn’t seen in a long time. Maria, the head caregiver, held up a pill bottle and started talking to me about one of Mom’s medications that needs to be reordered.

Jenny was still talking to me, looking intently at me from a few yards away, but I hadn’t heard a word she’d said. She started to cry, loudly, like a small child. I looked helplessly from one caregiver to the other, hoping one of them would do something, but they were paying Jenny no mind. “I’m sorry to be a crybaby,” she was saying, sniffling. I felt horrible.

I kissed my mom goodbye, told Maria that I would request a refill of that medication, and headed for the door. Jenny was between me and the door. She stopped sniffling and looked at me with hopeful eyes. “Will you drive me to the party?” she asked me. “It’s not far from here, just over on Van Nuys.”

I put my hand on her shoulder and said, as gently as I could, “I’m so sorry that I can’t.”

Jenny began to cry again, almost wailing, “But I haven’t seen them for so long!” I patted her shoulder helplessly and then moved toward the door.

As the door was closing behind me, I was relieved to hear Maria saying “What’s the matter, Jenny?”

If my mom was crying like that, it would break my heart. But she’s my mom and maybe there would be something I could do to make it better. I never know how to respond when it’s another resident. And it breaks my heart just the same.

Planning Ahead

After the incident at the doctor’s office last week, I decided that I need to be proactive and start looking for a living situation that will meet Mom’s needs in the long term — before we have an incident that forces the issue. I would like to get her into a community that specializes in dementia care. I toured one such community after work today.

I saw a lot of things I liked about it: the spacious dining room with high, sloping ceilings and plenty of room for walkers and wheelchairs to maneuver between the tables; the large TV lounge; the quiet, tree-lined street on which it sits; everything on one floor, so no elevator causing a traffic jam at meal times. The activities are more in line with her interests, including a weekly Scrabble game and Bible study, and they have an actual Activity Director. The residents, nearly all of whom have some degree of dementia, all seemed friendly and engaged. Though it was after dinner, lots of folks were up and about in the hallways. Lots of the rooms had sliding doors opening onto a central courtyard.

On the flip side, the rooms are significantly smaller than her current one. She’d have to get used to a twin bed (instead of full size) and could only keep about half of her furniture. And because it’s specialized care, it costs more: a minimum of $600/mo. more than she’s paying right now, which puts it at $300 (or so) more than her total monthly income. A shared room would cost the same as what she’s paying now, but the shared rooms aren’t noticeably larger than the private ones — so she’d be down to just a bed, a dresser and (if she’s lucky) one chair. While she’d enjoy the company of a roommate in a larger space, I can’t see her living like a college student in a dorm with no privacy whatsoever.

I have a good feeling about this place. Maybe by the time she needs to move, I’ll be able to figure out how to pay for it. I could get a roommate, so that the money I save on my rent can go toward Mom’s extra expenses. (Is it completely ludicrous to be contemplating getting a roommate myself so that my mom doesn’t have to have one? But at least MY roommate situation would include a private bedroom and bathroom.) Or maybe there’s something better out there. I’m going to keep looking.

Meanwhile, when I called her tonight, she seemed so “with it” that it made me doubt whether she really needs to be in memory care just yet. Hopefully we’ve got a little time, a nice comfortable plateau to settle in on before the next decline.