Dementia and Hospice

LeelaBlack

Hi! I'm new here. Does anyone else here have a parent with late stage dementia and is on hospice? My mom fell Oct 9 and had a 18 day hospital stay starting Nov. 27. From there, she was unable to return to her MC place because she was not ambulatory. Now is she is in an adult foster care home, on hospice and bedbound. She is confused, sometimes refuses meds, her "attends" (depends) changed and today was very emotional. She calls and calls and calls. I am a full time worker, the primary provider, I have two kids and they are both very active. My therapist said to go take a vacation and so I did but when I did is when she fell and I came back early. I am an only child and no other family is available to help me. She is currently on a combination of meds including Morphine and Clonzepam which seems to be making her more confused. Anyone else have this experience and what meds seemed to help better? She is confused, agitated and cries. Thanks for listening.

harshedbuzz

@LeelaBlack

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

I didn't have the issues you are describing; my dad lost the ability to use most tech in the middle stages of the disease. What you are describing is not uncommon here.

It sounds like you have a good care team in place for her. I would speak with the hospice doctor about tweaking her meds, the constant calls are likely the result of anxiety/agitation that isn't fully addressed.

Your first duty is to your children here. It sound like the calls are disruptive and distressing for you. Perhaps it's time her phone went missing. Because of her short-term memory deficits, she isn't getting any sustained benefit from them. If you don't have the heart to do this yet, another option is to get yourself a burner phone with a soothing outgoing message just for her and leave the ringer off. The care staff will call you if it's important and you can call mom when it's convenient for you and you are emotionally ready to take it on.

HB

PS Your vacation didn't cause her fall. Gravity is faster than we mere mortals. There are times when my dad, and especially my non-PWD mom, went-to-ground with me standing right next to them.

M1

Hi Leela, there are certainly many folks here in similar situations and with hospice on board. I agree with harshedbuzz about the phone, it's causing you distress and not relieving hers.

LeelaBlack

https://alzconnected.org/discussion/comment/195755#Comment_195755

Thank you for your words. Great idea about the burner phone but my dilemma would then be she has my phone number memorized and would that confuse her more or would it help?

I did talk to hospice- they are going there today to assess again meds and care needs.

You are absolutely right that the care staff will call me / hospice. They have been checking in with me here and there. I guess I get confused because they seem to have a lot of members there and there's no staff bios or anything of what does what on their website which would be super helpful as a visual leearner.

I am going to try to answer the first phone call from my mom and then if she calls repeatedly, then not answer unless it's the house phone or the hospice staff calling me. I hope that will help.

I wish i had a crystal ball but I don't - no one does. I Just hate the fact that she's bedbound as this is not what she wanted and she has no motivation to try to get up and get her muscle strength back.

Anyways, thank you for your thoughts. I appreciate it.

CaliforniaGirl-1

There are phone just for people with dementia that will ring the first time and then after that will have a message saying the person you are calling is unavailable right now. You can also program quiet times when the phone won't work.

Bed bound is very tough on people with cognitive deficits. (Its tough on everyone).

towhee

Welcome to the forum. I am glad that hospice is going to reevaluate the meds. Morphine and a benzodiazepine are part of the standard drug tool kit for hospice, morphine for pain and breathing difficulty, and a benzo for anxiety. Patients needs however are not "one size fits all" and it could be that different medications would be more effective. Both of these indeed can cause increased confusion and it seems that the anxiety is not being well controlled besides. It might benefit you to discuss with hospice and the doctors your expectations of your mom improvement, and see if you are on the same page.

Caregiver#1

About your mom, I was with mine everyday of 6 yrs w Alzheimers. Luckily I lived with her, so did my brother and her husband my dad.

It sounds like she is confused esp on the two meds. I would not use them until she is in pain or anxious, that is my opinion though. I feel your moms confusment is not seeing a familiar face...is it possible for you and your family to take turns filling up her time with her family, it sounds like she is really trying to reach out.

I now take care of my father with Dementia, going on 4yrs. I was the last person he called. He didnt know it was his daughter, he just needed to talk. I gladly listened. He no longer knows what a phone is.

I feel that once your mom understands you are still a phone call away, it will ease her mind. And hopefully the transition works for all of your family.

LeelaBlack

Thank you all. My mom has passed away Feb. 12, 2024. The phone is no longer an issue. I will miss her phone calls but I will miss her more and I now begin the next chapter of my life without my mom and finding myself again. Sending you all caring thoughts as you navigate your own theory.

DCCEPEK

We're still here for you. Sorry about all and prayers for all. It's going to get better.

MIL stage 7 and holding on.

psg712

Leela, very sorry for the loss of your mom.

harshedbuzz

@LeelaBlack

I am sorry for the loss of your dear mother. She was blessed to have a loving daughter.

HB

KMcCalla

So sorry for your loss.

JeriLynn66

I’m so sorry for your loss. Praying for peace and comfort in this difficult time.

mommyandme (m&m)

I send my heartfelt condolences to you and yours. I’m also in stage 8 after losing my mom. It’s all just so very hard, I’m sincerely sorry for your loss. Take good care of you. 💕

CaliforniaGirl-1

I am so sorry for your loss. It will leave an enormous hole. Try and remember the person she was before this awful disease took her away and that she is not frightened and scared anymore.