Parents Caring for Parents Support Thread (Part 2)

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4193

I am annoyed at my mother’s PCP. Last week she was sick-cough, mucus, and weakness. They don’t schedule sick visits, you have to talk with the nurse first. I have called right at opening at 8:00 and I think the nurse returned the call at lunch time. Talked to mom and said she would call her back after speaking to the doctor; she asked if mom had done a Covid test, which she had not. Nurse calls back mid afternoon and ask that mom come in the next day, Friday.

My aunt takes her as I had Grandfriends day at GD school. For some reason the doctor had in her notes that mom had done a Covid test, but mom said that was not correct. Now, I am worried about RSV, not Covid, and with her asthma, thinking she might need a chest x-ray. She did get a breathing treatment at the office, no testing, and asked to do a Covid test when she gets home. :face_with_raised_eyebrow: She did get an Rx for steroids and antibiotics. I got to her place shortly after she arrived home, did a Covid test, which was negative.

She was feeling so poorly Wednesday night that I called again Thursday morning at opening. Nurse called mom late morning; mom actually was feeling much better. While talking to the nurse she would start coughing and the nurse could tell she was struggling a bit, so again, was going to talk to the doctor. I wanted mom to be seen again before the weekend as I worry about pneumonia. Mom had a good day yesterday, but did too much, so doesn’t feel good today. Nurse again calls back around noon today as she forgot to call back yesterday after talking to the doctor. At 2:30 today she wants mom to go right now for a chest x-ray; I had just left her place an hour before! Mom refuses to go today, so I told her I wanted to go in the morning in hopes it gets read and she hears back from the PCP before the weekend.

Why am I annoyed? You have a 93 year old that one week before moved to a retirement community and is sick. You don’t test for Covid, RSV or flu while she is sitting in your office? The Urgent Care centers all do a one swab test for these! You don’t think to get a chest x-ray with an asthmatic, sick 93 year old? No mention of OTC meds that might make her more comfortable? Sorry, we are a medical family and it irks me the lack of care patients are receiving. I shouldn’t have to request testing or medication, you should know what to do! I know medicine has changed, and it isn’t the same as when my husband started in the early 80’s, but come on, use some common sense and take care of the patient!

I have a few relatives that have used this practice, but have since left. The doctors are fine, but the staff is horrible, although this nurse seems decent as best as I have gathered from my mother.

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4194

I can’t believe they didn’t do a chest xray – those are a no brainer for elderly with malaise and cough. I hope things get turned around soon.

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We only have scheduled visits with PCP (every 6 months) - and he is very thorough. Anything else coming up, have to go to urgent care. Urgent care has an x-ray facility 1/2 block away. We also have urgent care with orthopedic group.

Have had a few snags - and have had them worked out.

Who does 7 stitches on a finger (end almost off) and doesn’t order oral antibiotic and antibiotic cream (but did a finger x-ray)? Urgent Care NP. Started ABT in time to not have bone infection (we telephoned), but did have to have another finger x-ray and then CT of the finger as Radiologist could not see clearly enough with x-ray. Had to go to Hospital ER because finger bled so bad with stitches removal (is on blood thinner).

Patient advocate needs to help guide non-medical person through the hoops.

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With my dad we refused to see NP or PA. Fortunately the doc understood.

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One of my friends had her foot/ankle severely debilitated after a PA at the ortho group ‘treated’ her; she actually needed surgery, and MD said she was lucky to be walking. PA was fired. With DH’s recent debacle, in time I will write to the more senior MD in the group about not being assigned correctly by PA - and not lined up with MD appt within a day from that visit to be properly cared for. Thankfully we got DH in with the right MD after 6 hours of telephone tag and struggle, and continuing to reinforce that DH has a broken bone and needs to be seen by a MD and the right MD - foot and ankle MD. Two were working that day in two different offices near our home.

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Back from my five days. I got the nurse back out there Friday night who saw her Tuesday, the night my sister was so alarmed. She said my mom was like night and day.

I absolutely believe that my mom was doing poorly that Tuesday night. My sister, who is so drama-prone, took it as the beginning of the end rather than just a bad day. I have to not follow her down that rabbit hole, but it’s like the boy who cried wolf. Will it get to the point where I tune her out? I don’t know.

The nurse who came out Thursday who bathed my mom (after no shower for six days) and I agreed to take her off the BP meds as her BP was so low. And then the nurse suggested getting her off melatonin, which is something my brother and his wife had added on their own. I thought the remaining days we were there she was much more alert and regained periods of lucidity. I am happy about that, but maybe my SIL won’t be as happy. She still slept through the night and well into the morning so I hope that makes everyone happy enough.

Bottom line: I think we still are looking at months. I mean, if she died in her sleep tonight, I wouldn’t be shocked, but she has no medical issue, such as a cancer, at this time that will contribute to her death.

Last thought: My relationship with my mom wasn’t the best my entire life, but in the past year, the dementia has let her access emotions she wasn’t able to while I was growing up. This weekend, while I was helping her stand, she gave me the biggest hug. She held on so long and so tenderly. Another time, I leaned over to help her up, and she kissed me on the forehead. I’m telling y’all that she wasn’t that tender in my youth. It will make me that much sadder when she’s gone.

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Your post made me choke up. It’s never too late for some good memories. <3

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4200

Me, too. I will say that I’ve been doing my own work for a few years now so I think that I’m better able to receive her tenderness than I was growing up, when I felt (and, truthfully, was) really criticized by her. I’m glad that when she goes that I will be in a better place about our relationship. No regrets. I’m trying to do right by her right now. I know there are reasons she was so harsh on me, most of which had absolutely nothing to do with me.

I totally spoiled her while I was there, bringing her coffee in bed to help wake her up and coax her to the breakfast table. Every day, the coffee was like a revelation – “Coffee is GOOD!” :smiling_face_with_three_hearts:

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My mom also never told us she loved us nor gave us hugs until last week or so of her life. I was grateful she was able to tell us that and give us hugs. We always knew she loved us but she never put it into words until near the end of her life.

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My parents were loving - my sister and I were very lucky (except for the fact they divorced when I was in high school). Still we both commented how nice it was to have time with Dad at the nursing home during rehab for broken hip. He just seemed especially caring and complimentary.

GOOD NEIGHBOR STORY - One of Dad’s younger retired friends/neighbors rang the doorbell yesterday after learning Dad was back home from rehab. Volunteered to do whatever help or driving is needed. Ha, they guy will get put to work tomorrow monitoring Dad as he gets down (and later back up) all the stairs to get to the car for a medical appointment. A small favor, no driving needed. But such a nice thing to do, gives the wife and family peace of mind.

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End of life, the ups and downs of illness are very hard to assess at times. I’d show up for a couple days to see my mom and my dad always said what a difference it made. I only saw her looking up and so much better than I’d heard of her condition. What I now realize is that she made that effort for me and everyone benefitted. It was hard to figure the doom and gloom
from my perspective.

Same with my dad. I was doing the caregiving but the visits from someone else would brighten his mood and energy. The difference was palpable. Even visits from neighbors. Always welcome it. Just saying that the person you see is not necessarily the same as the constant caregiver. It’s not all “crying wolf”.

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I do think mom is better when I’m around. She used to say the same thing about dad when I came to visit. Why that is is up for debate, I suppose.

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In our caregivers group, people often complained that their parent presented so well with others and that then noone believed their version of events! The caregiver who is there the most, sees the real picture. The effort at that presentation can often result in days of rest!

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Like I said, I believe that my mom’s BP was low and that the nurse ordered oxygen, etc., but my sister and I have different ways of framing things. Her response was to call an emergency conference call for all of us and to tell me later that she thinks mom has two weeks to live. My response might be mom had a bad day and let’s keep a close watch to see what develops. All I’m saying is that she goes from 0 to 60 in no time flat and because i’m not there i have to trust her even though I KNOW from 61 years of experience that she is prone to drama. Not being on-site is stressful, too, because everything is being filtered, sometimes by unreliable reporters.

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Somebody (hospice nurse?) said that if you see drastic decline from month to month… it coudl be months left. Week to week… weeks. Day to day…. days. But that would presume consistency, not the case for your mom. So it really can be so hard know. If you find that she stop eating / drinking, that that could be a meaningful indicator.

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My friend would fly in and take her folks all over during her visit and they’d always perk up for her and end up in the hospital exhausted after she left. She could never understand it but it exhausted the day to day caregivers with this cycle that repeated whenever she visited.

Everyone was happy she came but sad that folks got worn out from the visits.

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Good advice is don’t count the days or months or years you have left with someone …just keep making the moments that matter.

Be realistic about the time you may have left with someone but I think I’d drive myself crazy worrying about a timeline.

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That’s a good point. But a known timeline would help the caregivers (and alternate caregivers) plan the rest of their lives a little bit more. Wish I had known my mom only had a week left when I moved her to my house. Might have found a way to let her stay in her own beloved place (though with early days of Covid every plan had a challenge).

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4211

We all are doing the best we can, given what we know at the time. You can’t second guess yourself with what you know with hindsight.

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Talk about the fragility of life. My dad has a wonderful caregiver, Yvonne. She is a sweetheart and so on the ball. She has called 911 more than once when Dad needed help. She was a Godsend when I went down to Texas to clean out my parents’ house and plan my mom’s unexpected funeral.

Yvonne and her boyfriend went down to Puerto Rico this past weekend. While snorkeling, she passed out. They had to revive her with CPR. They discovered she’d had a brain aneurysm. They planned to operate but now say they can’t because there’s no brain activity. Bleep. I think she’s in her early 50s. I can’t believe it.