When do you know it’s time for memory care arrangements?

Katie S

Can people share how/when you decided it was time?

M1

Katie I'm an old primary care doc, and in medicine there was always a saying that if you wondered if a patient needed to have a spinal tap, then you don't hesitate, you do it. This is similar: if you're thinking it might be time, then it's probably time. I don't know that there's a single answer to your question, because every family has its own circumstances. But in general, I would tell you that we all tend to wait too long (same is true for requesting hospice care at the end of life).

My turning point was abrupt because of threats of violence. I was just at the point of trying to find home help, which wasn't to be had in our rural area in the middle of the pandemic, and had just put my partner on a waiting list for memory care when she suddenly had to be hospitalized and placed from there. I took her first to our primary care doc's office, who was a good friend, and when I told him about the threats of violence, he just looked at me and said "you just can't do this any more." This was after eight years of taking care of her at home. He was right, but the two years in memory care have also not been easy or smooth.

Emily 123

When my mom's care needs outstripped what was provided, and she needed more oversight/engagement and a better staffing ratio.

psg712

When my mom could no longer find her way from her AL room to the dining room. When she did not bathe or change clothes for two weeks. When she left her beloved cat without food for days.

Jackie_K

Wondering the same thing, but to pile on here, what is the difference between assisted living and memory care? And is there something after memory care?

Our neurologist gave us the same advice last week for my mom - usually people wait too long, and if you're thinking about it, that is probably already your answer.

psg712

AL means different things in different facilities. In most places, the resident needs to be fairly self-sufficient with bathing, dressing, other personal hygiene. AL normally provides communal meals and social activities like games, art or cooking projects, movies and holiday events for residents to enjoy as they choose. In my mom's AL, there were private and shared rooms. There were occasional outings on the facility minibus for those who signed up.

There was also the option of assisted showers, diaper changes and prompts for things like brushing teeth, changing clothes, etc. Those services were an extra charge per month, and they added up quickly. I found that eventually, staffing still was not adequate to provide all the scaffolding that mom needed. The activities became scary for her as she could not follow game rules or movie plots, come up with the words to express herself. With a fulltime job and a family at home. I could not get in to see her every single day. I went 2 or 3 times per week and would find that she had not brushed her teeth or changed her clothes since I left. She was allowed to keep her cat there, but she began neglecting to take care of him.

Most memory care facilities are locked, meaning that one cannot enter or exit the facility at will, to prevent wandering residents from getting lost or harmed. There is a better staff to resident ratio in MC. Activities are "failure free", designed for PWD. At my mom's facility, the care is all-inclusive, which though pricey, means that she is not paying extra fees for showers and personal hygiene. .When speaking with the director about the move to MC, I asked what circumstances would prevent her from staying there for the rest of her life. He said if she requires a 2-person lift for transfers, or becomes completely bedbound. I have seen, however, a few residents who became bedbound and stayed on with hospice support or additional help hired in by the family. They do all they can to prevent someone at end of life from being moved again. But there is always the possibility that someone would have to go to a traditional nursing home if they became bedbound for an indefinite time.

All of this can vary at different facilities. Make a list of your questions. Try to hang out in the common areas and just observe the community and the staff. Find people who have used the facility to talk to. I hope that you find the best situation for your LO.

Hope5757

Thank you @psg712. This was very helpful.