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.

 

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4 thoughts on “This is a hard part

  1. I am sorry this is becoming so difficult. Like you, I wanted to keep my parents out of a nursing home, especially after dad was in one that seemed so chaotic! I found some helpful suggestions later from the woman at Eldersource, but in the end dad passed away before I had to put him in a nursing home. I hope your state resources can help you on the financial front! Good luck!

  2. Oh Lira, I’m keeping your mom and you in my prayers that the drs get that couch and guild under control and the Medicaid thing works out. They had to move my mom and dad from assisted living to skilled nursing once my mom’s needs increased. Blessing was that there was a skilled nursing home in the same complex/company that they were already in and the move was easy and since we were already under their umbrella the home helped us tremendously getting both Mom and dad covered under Medicaid. There are good homes out there. The icky ones give all nursing homes that negative connotation. I’m still friends with many of Mom and dad’s nurses and CNAs even after a year plus and almost a year after their deaths. I hope that the right place finds you and you find a caring person who helps you navigate all the Medicaid forms. Maybe talk to a social worker at the local hospital or a local hospice and find out what skilled nursing homes they would recommend taking their own family to. (before it’s an emergent thing)

  3. Hard to “like” news like this, but it’s important to acknowledge. Wishing you peace of mind, good health and a clear head in the coming uncertain weeks. Encouraging you to keep your balance, and hope you can talk & spend time with friends and family for support.

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