We have had 24 x7 home care for my LO for two years. They are very good with the general care items (Cooking, cleaning, changing diapers, trying to engage my LO, ...). And as the dementia progresses, it is getting harder and harder for them (and me) to cope with the delusions, mood swings, forgotten name (including mine). These are good people who know about home care. I know that there is special training for caregivers in living with the progression of this ugly disease.How do I find people to come in and help her and me to give the best care we can? I know there is no turning back the clock. I just want to give her the best days of her life.
You sound like an expert. You gave a very good answer. I would have to agree, that the current people involved in her day-to-day life will provide comfort and familiarity. There is no magic answer for managing dementia care. The people around her will just have to figure it out as they go, and go along with the changes they see. You have to be able to adapt to her changing needs, whatever that might look like.
My home care agency offers a trained behavioral specialist.
Alzheimers.gov is a website published by the US Dept of Health and Human Services, offering help to find resources in your community.
As the disease progresses, you can't possibly know what direction it will take on any one day. For instance, the delusion that happened yesterday will not be the one that happens tomorrow. Yesterday's delusion was hearing voices and talking to them in the bathroom. Tomorrow's delusion may not include hearing voices but believing that a raccoon is living in the attic and they need to go find Frank (who's Frank??), so they head out the door and wander down the street mumbling something that no one can understand. You have to go looking for them but they don't recognize you when you catch up with them. Then what?
A mood swing may require more medication(s) to keep the patient under control, but how much? and given at what time? and it makes the patient lose orientation so that they fall and get hurt, which is when you must decide whether to call an ambulance to take them to the ER or maybe drive them yourself, but then they are in pain and scared and try to open the car door while it is in motion. These are real things that happen. You will have never seen it all, and you will never know how to plan for it.
Your best bet might be to find caregivers who formerly worked in a care facility where training was ongoing. Where they have cared for multiple patients with severe dementia over periods of years, patients coming and going (meaning they died), and nothing surprises or daunts these devoted caregivers.
It would be hard for you yourself to put together and manage such a team. It's a full-time job and as a newbie at it, you'll have to learn by doing. That's not necessarily the way to give her "the best days of her life." This is why many choose memory care facilities. I hired and managed a very good caregiver team for my parents who had dementia. My husband now is in a memory care facility where all his needs are met better than they could be with any caregiver team I could assemble to work in our home, though that's what we had until a year and a half ago. He has 24/7 doctor and nurse on call. Hospice care on the premises. Friends with the other residents, and they have become family to him.
Your intentions are noble but not necessarily realistic. The best days of your loved one's life are behind her now. When dementia walks in your door, happy walks out. I'm so sorry you are going through this, and I wish you luck in finding the best care for your LO.
You may eventually need to place your LO. The care becomes too much for one person especially if they are an older person too.
are there other medications we should consider?