Memory Care Challenges

Gilmore2008 · August 23

Hi Everyone,

My DM has been in MC for about five months after her AL said they couldn't manage her eloping and sundowning episodes any longer. Overall, the MC facility is nice, most of the staff really love my DM so I'd say it is a 6-7 on a scale of 10. The usual issues with lots of turnover which is frustrating. My mom has lost a lot of weight since the beginning of the year, but we've been able to manage her sundowning with meds so she is sweet the majority of the time. She's had a few falls and is now practicing with a walker. My current issue is how the staff is letting her sleep way too long. We had a care plan meeting where we discussed making sure she is up before lunch so that she can get hydrated and eat as she's become very weak. I went by to visit today in late afternoon and she was STILL in bed and hadn't had breakfast or lunch and probably nothing to drink. I had to get her up, had her drink fluids, got her dressed and I had brought her a light lunch of her favorite things as a treat.

Has anyone else experienced their parent being in bed all day long without food or hydration???? What if I hadn't stopped by? Would staff let her stay there through dinner? I am still so upset about it and plan to talk to the director on Monday. What do the poor residents do if they don't have family checking in on them? I also brought some of her laundry home to speed things up a bit. MC has needed much more in person attention than I had anticipated. I'm there 5-6 days a week checking in and with a FT job it's becoming a lot.

harshedbuzz · August 23

@Gilmore2008

In stage 6 of the progression, PWD do tend to sleep differently than before. Sometimes, the overnight sleep is disordered or circadian rhythm disrupted causing them to sleep more during the day. For others, there's just a greater need to sleep as if they're exhausted from living with a diseased brain. Another piece is that sometimes people in the later stages seem to shut their eyes to kind of tune out which can resemble sleep.

As the disease progresses into later stages, a PWD will typically lose weight. Often, they don't seem to perceive hunger or thirst and eat very little when offered. In the very later stages, they may stop eating/drinking entirely.

I think it makes sense to have a care meeting to discuss what they're seeing through the day. Do they try to wake her or is the policy to respect resident's own schedule? How many hours a day does she sleep? Has she become a night owl or is she progressed further than you thought. One caution I would have is that your mom should be awake for feeding and hydration. Forcing food on a person who is drowsy or not upright in a chair can lead to aspiration pneumonia which is a common cause of death for PWD.

I can appreciate that this is hard, especially for someone who is working. I hope you come up with a good plan to improve your situation.
HB

ARIL · August 23

Sorry you and your mom are dealing with this awful disease.

My life is much like yours: working FT, at MC 5-6 times per week. My dad is at the stage HB describes: sleeping most of the time, often missing meals. He is more responsive to me, so I can usually convince him to get him and go to dinner. But not always. If he does not wake up easily, I let him sleep. Still ambulatory, he is growing weaker

When I ask him how he feels, he says, “I am exhausted.” I believe that is true.

I agree that you need to ask questions about protocols and your mom’s overall sleeping habits. But just be aware it is possible that what you are seeing is part of the decline.

Gilmore2008 · August 23

Thank you both for your response. Mom is stage 5 and seems like things change every week. The staff wants to let her sleep in and I'm ok with that as long as its not past lunch at this point. She gets up for me ok and today I showed one of the nurses how I do that (getting her something to drink and then getting her to a chair to ease the transition from bed). I got her showered and dressed before lunch and one of the nurses took her to the dining room where ate pretty well.

I wouldn't say she is really a night owl but she seems to go to bed between 9-10pm. Last week I was visiting and she was falling asleep in her chair around 7:30pm. She did lose a hearing aid (has lost multiple ones) and is pretty much deaf so I know not being able to hear well and the dementia could tire her out pretty quickly.

With her fall last week that got her to the ER she is just so weak I worry about her falling again. I have noticed she is coughing some when she eats so that's not good.

caregiving daughter · August 24

Did I miss the stage of illness that your mother is in? If she is late stage, near or in hospice, I can understand why she is able to stay in bed for extended periods.

If she is not late stage, your description of the schedule is concerning to me. My recollection of my mom's memory care would be that all are up and dressed to sit at the breakfast table by 9a. Yes, there were some folks that were unable or un-interested in eating. Typically, in the latter, a caregiver would sit with the resident and provide encouragement and assistance. Food and liquids taken, as well as weight, were all recorded in the resident's electronic chart. For those whose physicians felt there weight was suffering, yogurt or Ensure was given mid morning.

DO keep visiting at odd or fluctuating times to keep aware. It is good that you are questioning the situation.

Gilmore2008 · August 26

I sent an email to the director Monday morning and for the past two days she has been up and at meals. I called to check after lunch, and I saw her this evening after dinner and the nurse said she had been up all day with a short nap before dinner (she woke up very confused). I saw her with a nurse leaving dinner and she was very happy to see me but told me she was upset as "she had been arrested and accused of stealing." She was ready for bed at 7pm.

Gilmore2008 · August 26

Also, she has lost 17lbs since January and Ensure upsets her stomach so looking for an alternative. She's under Palliative care as she hasn;t been approved for hospice yet.

craftygalinstl · August 26

How often does the Palliative Care nurse visit? Can you discuss this with the palliative care team? Have you considered putting a camera in her room? I was totally opposed to this when my parents went in to MC, but I’m considering it now. My parents won’t remember that the camera is there, and that way I can check and make sure they are leaving the room for meals. If they aren’t, I can call the staff and tell them.

Memory Care Challenges

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