Is my mother an anomaly? (help with staging)

SierraGold

Hello All, I am new here. My 83 year old mom has come to live with me after the sudden passing of my stepdad. She used to live one state over, so I have no inkling of what stage she might be in concerning her dementia. I have had no contact with her previous doctor, nor do I have any medical records at this time. My mom was diagnosed with vascular dementia a few years ago, but she has had noticeable symptoms for the last 10 years. The MRI stated that she had significant frontal lobe atrophy as well. She has not had a stroke, at least none that we know of or could be detected on MRI and CT scan.

She can no longer walk. The shuffling started about 5 years ago and has progressed to completely non-ambulatory as of 1 year ago. She's weak and shaky when trying to move any part of her body. She is 100% urinary and fecal incontinent, and has been for the last several years. She has that characteristic "flat affect" most of the time, but she does still smile sometimes and laugh and can show enjoyment. She sleeps a lot and tires mentally very easily. 2 or 3 hours awake is about her max. She has a very hard time speaking-- slurs her words and it seems like a real effort to get her words out. She doesn't talk a whole lot... but does respond if asked a question. She frequently gets objects confused i.e., called a large pond a "pool" and a wild fox a "monkey". Short term memory is not good at all, but long term memory is somewhat good. On occasion she will not know who a family member is in a photo. She has zero interest in hygiene... no longer brushes her hair and really, really hates when she has to be washed. She will attempt to brush her teeth when prompted. She would sit all day and night in a dirty Depends and not think anything of it. Her manners are gone-- rarely says please or thank you, burbs out loud, rarely tries to initiate conversation, ignores people, etc. She can still feed herself, though she spills food all over the place and doesn't care or notice. She cannot dress herself. Math skills are almost completely deteriorated, same with telling time. She requires 24/7 care because she can't walk nor perform any of the daily living essentials.

I am in the process of getting her a new doctor here in my area so I'm sure I will get some answers then, but what stage do you think she's at right now? I would be grateful for any feedback. Thank you.

M1

Welcome to the forum. This is pretty late stage disease well into 6 if not seven. Im sorry you are facing this but she is lucky to have you be there for her.

Rather than seek a doctor i would call tomorrow about a hospice evaluation. If she can't walk she will almost certainly qualify, and they can then help you decide what other resources you may need. You do not have to have a doctor's referral for hospice, you can call yourself.

mommyandme (m&m)

My first thought is call for a hospice evaluation. They have a doctor for their patients. A nurse will come once a week and a CNA to help with cleaning your mom and checkups. Let me say that with dementia, hospice isn’t necessarily on the normal “6 mos to live” guidelines. My mom was on for almost two years. It will be well worth the discussion with the admitting nurse/PA. If your mom is admitted, which I imagine she will be, they help with the cost of meds, supplies, equipment etc… Hospice can be a valued extra layer of support for you and your mom for the rest of your journey. If there comes a time that you place her in a facility they will follow her there. Do not be fooled that getting hospice in is a death sentence, it is not. Many wish they would have called hospice much sooner than they did.

your mom is so fortunate to have you. And welcome to the forum but wish you didn’t need it. Keep coming back.

Here’s a link that might help with stages:https://www.dementiacarecentral.com/aboutdementia/facts/stages/

Also: do you have DPOAs in order?

SierraGold

https://alzconnected.org/discussion/comment/177147#Comment_177147

Thank you so much. I really appreciate the information. Looking at the stage charts I was thinking she is late middle stage, but because she can be pretty lucid sometimes it struck me as uncommon in the dementia experience, and maybe she was only just entering the middle stages. This is no fun for anyone. Such a horrible disease 😪

SierraGold

https://alzconnected.org/discussion/comment/177182#Comment_177182

Thank you. I will do this today. I appreciate all the helpful information!