Another step in progression

psg712 · May 15

Mom's MC had an event for residents and families tonight. They had dinner out on the courtyard, grilled hibachi style meat and veggies, nice music in the background. It was well planned and most residents seemed to enjoy it.

It was suddenly evident to me that my mom is now one of the more advanced dementia residents there. Yes, there are a few who look worse than she does. But she no longer knows what to do with a fork or spoon, even if they are handed to her with a bite of food on them. Even finger foods have to be handed to her with encouragement to take a bite. She initiates no interaction and often doesn't respond when others try to engage her. She sits and stares or sleeps. Speaks very little. It took me 20 minutes to convince her to come outside for the meal. She just doesn't want to move, even though she can still walk with a walker … getting less steady though. She's on very little medication, nothing that would sedate or add to her confusion.

It's less and less enjoyable to visit. Of course I will still do it, particularly to advocate for her, but there is little reward in watching her sleep through her life. And it surely doesn't seem that she is getting any enjoyment from visits ... although she usually smiles when I wake her to tell her I am there. Smiles and goes back to sleep. I guess the smile will have to be enough now. It's just another step downward for her and adjustment for our family.

Emily 123 · May 15

I'm so sorry. It sounds like you're doing an amazing job. I understand what you're experiencing. It became harder and harder to visit my mom as she slipped into stage 7. I did skip some visits because I was so emotionally tapped out from watching the disease chip away at her. I felt like all I thought about was her. If I was there it was hard to see her so withdrawn or to see her drift into another loss, if I didn't visit I was consumed with guilt and started feeling anxious. Dementia's a wrecking ball.

[Deleted User] · May 15

The user and all related content has been deleted.

Grenah · May 15

This past Tuesday my mother had an episode where she is not responding. It's almost like she is catatonic. She will be sitting or in a lounging position and does not respond to anything, even an ice cold pack on her neck. We have no way if knowing if something is wrong, stroke, infection, anything. As a last resort we call 911. Mother is advised that this step will take her to the ER, which she hates. EMS comes, takes her vitals (which are all perfect) and then inflicts a little pain. This gets a response, doesn't wake her but a response none the less. She is in the ER for a little while before she becomes responsive. All tests come back negative so there is no reason to keep her. This is not the first time she has done this but like a lot of her behaviors it is happening more frequently and with longer duration. Again, I don't know what this means and if it's approaching the time when she needs a level of care I cannot provide. Has anyone else experienced anything like this? Haven't had the time to log much lately.

Thanks for listening.

CaliforniaGirl-1 · May 15

My LO is also much less responsive and sleeps a lot. But occasionally she will notice me and once in a very long while she will smile. I deal with it by visiting for much shorter times. Instead of sitting while she eats and talking to her for a couple of hours, I now visit for just 15-30 minutes and give her a kiss and tell her that I love her very much.

It is as much for me as for her.

.Becky. · May 15

I'm sorry that things are declining with your Mom. It is so very hard for us to watch, as our loved ones fade away. I'm sending you a hug and stength as we all walk along this path together.

terei · May 15

All three of these descriptions indicate to me, at least, that the PWDs should be enrolled in hospice. Do they have DNRs? At this stage. I absolutely refused any transport to an ER and stopped waking my mother for meals. Give some thought about what would be a ‘good death’ for your LOs. Continued medical treatments and interventions are extending the agony of the disease…the last thing that I wanted for my mom.

psg712 · May 15

https://alzconnected.org/discussion/comment/272489#Comment_272489

My mom has a DNR, but that has never stopped her facility from sending her to ER for "altered mental status". The facility leaders have told me she's not bad enough for hospice, but I am seriously thinking about it. Appreciate your encouragement.

Emily 123 · May 15

Perhaps talk with her provider-they might be able to help. Sometimes the facility's hands are tied unless they have orders. I had a good talk with the NP at Mom's facility about goals of care. We were in agreement that short of something like setting a broken bone she wouldn't go to the hospital. Putting her through procedures or some kind of intervention wasn't likely to improve her quality of life. There's no way she would have thanked me for extending what her existence had become. The NP agreed that if Mom had a major event like pneumonia or a stroke we'd call in hospice.

Hospice for uncomplicated dementia can be a bit harder to get and is a stage 7 thing. MC said we should try to see if hospice could take her, and I think they did it because she was pretty non-verbal or unresponsive, and she just wasn't eating. She had started to not get out of bed for the day, so once the decision for hospice was made they just let her stay in bed if she wanted to.

This hospice nurse has several good videos on dementia & it helped me

https://www.youtube.com/watch?v=cman1LFs2Og

hospice_terminal_prog_dementia_alzheimers.pdf

psg712 · May 16

https://alzconnected.org/discussion/comment/272504#Comment_272504

Thank you, this is helpful. I've had multiple conversations with the facility health director and the NP about ER visits. They both understand my wishes but if the med tech on duty at 2 AM thinks something is amiss, they just call 911 and let me know when she's in the ambulance and on the road. It's a CYA situation. The NP cannot issue an order about this, her company is contracted by the facility and she says it's facility's decision.

Yesdnil · May 21

My father-in-law is still walking and engaging in some things, but just recently started having trouble swallowing and leaving his room less, plus his communication is down to basically one phrase he repeats with slight variations sometimes. The director of nursing at his memory care said he's not ready for hospice yet and she'll tell me when he is, but that did not sit right with me. I ended up just calling a hospice, explaining the situation, and asking how to get my FIL evaluated. They asked for his doctor's info, contacted the doctor themselves to ask for a referral, and set up an appointment to evaluate him the next day. A hospice nurse came, spoke with us, observed him, gave us her opinion that she thought he'd qualify, called the hospice dr who makes the final call, gave us the approval, and had my husband sign the consent forms in that same visit. Incredibly easy compared to everything else so far for him!!

Another step in progression

Comments

Commonly Used Abbreviations

Community Guidelines

Categories