Parents caring for the parent support thread (Part 1)

Parent Cafe Parent Cafe
11221

I am just unloading here.

Mom had spinal surgery on 7/25 and has not been making a good recovery. She has been unable to urinate, stand, walk, sit up independently, etc. She is in agony whenever anyone tries to move her. Right now she is having an MRI under full anaesthetic to see if something is wrong that she cannot do all those things.

She was supposed to come home (to skilled nursing is the same building where she and my dad live independently in an apartment- it is a life care facility with stages of independence), after 3 days in the hospital, but she is still in the hospital.

Meanwhile, Dad has Alzheimer’s. He was doing okay, but Mom was his rock, and he has deteriorated dramatically during this week. He lives 45 minutes from my house in the opposite direction of the hospital where Mom is, which is also 45 minutes from my house (though only 25 minutes from my workplace).

I have some helpers for dad. My paternal aunt has come up to NY from FL and is staying with him, my maternal aunt is helping to drive him since paternal aunt can’t drive due to vision, and a student with whom my parents worked, who has acted like a son to them through the years, is helping to entertain my dad. I love all these wonderful people and am so moved by their kindness and sacrifice. I also have to deal with the political challenges as they feel competitive with one another and their personalities sometimes clash. I keep emphasizing how together we are a team and we all need one another.

And we have an event for one of my husband’s college friends at his home in New Paltz this weekend, and he really wants me to accompany him for the weekend and the long drive, though I feel very conflicted being away from my parents. Husband does not ask for much, and much more often rearranges his life on my behalf (e.g., he took off work and babysitted for and drove my dad to the hospital one day this week while I was at work), so I want to do this for him, but what timing!

And, of course, son is leaving for college on 8/27.

I am at work, trying to concentrate, while waiting for the doctor to call and tell me what is going on with my mom…

11222

Wow the Grey King. All I can say is that I have had years like that and it gets better! Sympathies! Maybe you could go to the event in New Paltz but curtail it a bit? Is a compromise possible? It does sound as if your Dad is covered; will your Mom be in the nursing home? Can others cover you with her? Tough situation!

11223

@TheGreyKing sending you a cyber hug.

11224

So sorry @TheGreyKing. Sending you positive thoughts for your current situation

11225

Big cyber hug @TheGreyKing - tough with two parents ‘in crisis’. The hospitalized mom sounds really tough. The decline of dementia/Alzheimer’s is a different kind of stress. Hope your mom can get function back/QOL.

11226

Hugs @TheGreyKing , It is a lot to carry.
I’d suggest that you DO go with your DH to his friend’s party. And have a good time. Leave the guilt at the hospital because you need to replenish yourself as well as your DH. Do not let crazy suck you dry, even if it isn’t their fault they are not OK, that isn’t something you should let drain you.

Hope you also get time to enjoy the college move-in!

11227

We can each only do what we can. We went to cardiologist today with elder. He said he sees 4-5 patients over 90 years old every week, like our elder. He says his goal for them is keep them out of hospital and nothing invasive.

He says keep taking the medicine, use CPAP (refused) and exercise to help prevent stroke. Otherwise, he has no recommendations and made an appointment for re-visit in 3 months, but says to cancel and reschedule if he’s still find in 3 months.

11228

Thanks for all the well wishes, and good luck to all of you with your situations.

11229

@TheGreyKing wow, so much going on. If your parents are cared for, and you really want to go away to this event, I would go. You will be spending a lot of time caring for your parents in the years and months ahead and you need breaks. I you feel the trip will increase your stress, don’t go. @somemom I understand boundaries. I decided I will not take my dad to the bathroom. @compmom being closer does help with the stress. I suspect if you asked the staff to do more, you would have to pay. I love my situation with my parents at a B&C just a mile away.

11230

Most of the year I live closer. I am only living in this area because of my mother, renting. The rents are high so I do summer in the city and winter by the ocean. Saves money and I get nicer places. In some ways it is good psychologically not to be next door- 20-30 minutes away is perfect.

No, we would not have to pay more if I asked the staff to do more. The way her assisted living works, once you have help organizing meds in the cassette, you go from independent to assisted living. Assisted living’s base price, which we pay since her meds are organized for her, includes 6 hours a week of assistance. Showers, grooming, bathroom, escort, cueing for activities etc. However, she only uses 5 minutes a day, the time it takes for an aide to make her bed.

Everyone mentions board and care homes. I cannot find any such thing in my area.

11231

Compmom, you may want to consult a senior housing specialist. A Place for Mom does this kind of thing, I believe. Maybe board & care is called something different in your area, like residential care home?

11232

My understanding, at least in my area, not all board and care homes are good places to be. Staffing is a continual struggle, but I suspect that is everywhere. But you need to find CNAs who are less task oriented (often just doing the tasks is easiest) and interested in more personal time with the residents. The turnover is more difficult for me than it has been for my parents.

@HImom I like your cardiologists attitude.

11233

I have talked with an RN consultant who ran an assisted living for decades, a social worker in an elder services organization, a support group and an ombudsman. The assisted living my mother lives in is typical: they really cannot provide much in the way of services and are very limited by regulations. When I asked for a higher level of services, she refused them anyway.

I have no negative feelings toward my mother’s AL, I just hate so much money to be spent. Everyone has told me not to live with my mother. I struggle with her being alone so much. She has friends at the AL, with whom she eats twice a day, but the reality is that she stays in her room most of the time. Eventually, maybe sooner rather than later, she will need a memory unit but right now the goal is to keep her where she is.

Overall she is lucky and so am I.

11234

My mom, who will turn 90 in one week, has excruciating knee pain, and her primary care provider said knee replacement might be a possibility. I’m interested in other CCers’ experiences with this type of surgery on a very old, otherwise healthy person. Thanks.

11235

Knee replacement is a major surgery for anyone. I would give careful considerations to alternatives to avoid anesthesia and serious complications that such a surgery presents. The standard treatments; weight loss, PT, cortisone injections, hyaluronic injections; accupuncture should be considered first.

New treatments: www.nbcnews.com/health/health-news/cool-new-knee-procedure-eases-arthritis-pain-without-surgery-n771221

And my favorite option to investigate after PT, accupuncture and hyaluronic injections would be stem cell injections. My daughter is a vet student and has been working with a vet this summer using stem cells and plasma for healing and regeneration of tissue in animals and is quite excited about these procedures.
Our Approach - Regenexx

11236

The primary may not know what an orthopedist will. Sometimes it’s damage, other times, issues with muscles and PT is the better direction. Is there even an xray or scan of her knee?

Been there.

11237

Thank you! CC is such a great resource. X-rays have been done but will be repeated just before the appointment with the orthopedic specialist in three weeks. Steroids don’t work for my mom. She has been resistant to weight loss and PT but we (my siblings and I) will bring them up again, with her and the doctors.

11238

@compmom , I was reluctant to move mom from AL to memory care. But the staying in her room all the time is a big red flag. In Mom’s case, they didn’t have staff to verify that she HAD eaten when she said she did and she literally almost starved herself to death. When she went to memory care, they make everyone come out to the main area and eat. She got a lot more interaction and attention. Yes, it cost a lot more, too. Although I was paying an outside person to come spend time with Mom as well in the AL, so that ended. Just like moving her to AL in the first place, I wish I had made the move to memory care sooner.

My dad's wife did the rounds of every memory care place that was decent in our little home town. She ended up in a board and care facility that was really really perfect for her. But I think it was the only decent one in town. I was sorry for her daughter who did all the moves. (The lady went really crazy and paranoid and targeted my dad. He had to move away. Since he was nearly blind then, he really couldn't take much care of her, although he paid everything, even while she accused him of abuse and simultaneously begged to see him). But finding a place that works even mostly is such a relief.

@rosered65. My mom’s knee surgery was the final straw for her living alone as when she was in rehab, it was so clear that she was not abe to care for herself AT ALL. Don’t really think that it was the surgery per se, but it was a big step down that she never made up. YMMV, but it is tough surgery.

11239

@esobay, how old was your mom when she had the surgery?

I shared some of the CC-gleaned information (above) with my siblings, and my sister responded, “But the doctor said she is a good candidate for knee replacement.” I carefully responded that I think it’s good to gather information and be aware of other options in case the orthopedic specialist disagrees with the PCP.

11240

@rosered55 - Here’s another anecdote about knee surgery.

My mom had a total knee replacement about two weeks ago, and it was a life changing experience for the better! She is 80, in poor health, and lives in an assisted living community. She is still mentally sharp. Her knees have been awful for more than a decade, and she had exhausted other treatment options.

My sister and I were worried that the surgery would be too much for her, but we were wrong. Mom reported to the hospital in the am, had the surgery a few hours later, and was discharged back to her AL the next afternoon. Aside from needing a walker to keep her steady on her feet, she was able to take care of her needs as well as before the surgery! My sister and I were shocked.

She took heavy pain medication for only 24 hours after the surgery. Only Tylenol since she got back home. She says the post surgery pain is a breeze compared to the pre surgery pain. She can’t wait to have the second knee done.

Of course, everyone reacts differently to surgery, but I just wanted wanted to share that a positive outcome is also possible.