Shocked by sudden decline

MrsAnnabelLee

Mom is in stage 7 and we have been seeing more motor and language declines lately (though she is stage 7 she's hung onto more language skills than would otherwise be expected.) As recently as 2 weeks ago, while it was difficult for her to follow conversation or find the words she wanted, she could answer basic questions, and would even ask me relevant questions like "how are your girls?" 

Yesterday, I went for a visit and could not believe what I saw. She made absolutely no sense. Word soup. She was just saying random phrases any time I looked at her. She could not understand any question I asked her. At one point, she spoke to someone who was not there. 

She's also started having trouble swallowing. She will just hold food in her mouth. Walking was much more difficult for her and when I asked her to sit down in a chair, she didn't know what to do. 

This has all been coming over the past few months, but I just didn't expect it all to happen so quickly. I feel like suddenly mom is really "gone." She can't understand anything I say, and I can't understand her. She just seems so confused. It was a really hard visit.

M1

Every loss hurts I know.  Do you have hospice on board?  Sounds like it's time...

MrsAnnabelLee

I keep feeling the same way, but her facility doesn't think it's time for hospice yet.

sunnydove

Hi MrsAnnabelLee.

Sounds like our moms our almost identical in their disease. While my mom isn't talking nearly as much and you really have to prompt her, she can and will talk especially if she's in a good mood and she can still read. Swallowing is becoming more and more of an issue. I have to remind her to swallow what's in her mouth or she will chew it for hours like cud. Taking pills is getting to be such an ordeal. 

I live with my mom so I see her every single hour and every single minute of every single day (but who's counting?! Ha!) I am always shocked by how some skills are unlearned slowly while others disappear seemingly overnight and are gone permanently. There are no hard and fast rules with this disease, not only from patient to patient, but even from day to day for one individual. 

I can say that Mom has up days and down days. Since you don't see her every day, it's possible you just caught her on a really bad day. Maybe she hardly slept last night and is incredibly tired. Maybe something happened this morning (real or imagined) that stressed her out and she is now off center and will need to reset another day or after a walk in the sunshine to pull her out of it. Maybe she doesn't feel well and it's affecting her without her being able to communicate it. I wouldn't jump to the hospice conclusion just yet without seeing if it was just an off day. 

I'm sorry you had such a hard visit. It's so hard to watch our loved ones struggle and disappear while being completely helpless to ease their suffering or make it stop. She's lucky to have you. 

Phoenix1966

Like most members remind each other, check for a UTI if this change seems too sudden. You never know. 

And you can reach out to hospice yourself to have them evaluate your LO. You don’t need the facility to do it. If you think it might be time, there is no harm in having them evaluate her.

I’m sorry for what you’re going through. 

RaymondP

I agree with M1. You need to insist on a hospice evaluation. My mother is at the same stage but swallowing is not a problem, yet. She has been on hospice for 4 months. Medicare is more forgiving on their requirements for approval for hospice for dementia/Alzheimer’s patients. Why would the facility not accept additional help for your mother? The hospice services should include a caregiver 2 times a week for bathing, a nurse visit weekly and other services including a social worker, bereavement counselors and other support for patients or the family member. In addition supplies are now provided at no charge to the patient. This includes diapers, wipes, incontinence pads, meds etc. This is in addition to the services provided by the Memory Care facility. Your mother and you deserves this benefit of hospice.

Beauchene105

You can also consider asking for palliative care, which in my mom's case is sort of pre-hospice. The main difference between the two is that my mom is still taking curative meds, which by the way are covered for the most part by hospice. Hospice is definitely worth checking into since it's a Medicare benefit. However, don't expect every single item to be provided in unlimited quantities. For example, hospice only provides one pack of briefs per week. My mom uses more than that, so it's up to family to have spares on hand. The same goes for other supplies, such as bed pads. I'm only mentioning this so that you'll be forewarned and prepared to supplement as needed. Hospice does provide equipment, which is very helpful.  I recommend getting palliative care/hospice on board.

Elshack

I too would urge you to get a hospice evaluation. They will determine if she qualifies for pallative care or the more involved hospice care. The hospice nurse was the one who told the staff at memory care that my DH needs to have his food pureed as he was pocketing his food and had difficulty swallowing.

Addyam

I'm very new to this post and to caregiving, so I don't have too much to add, except that your dog has the sweetest face ever. I wish you peace and some reprieve from your grief from time to time.