My Mom’s dementia is progressing, and my husband and I have been providing care for her during the day, at night she is home alone. I’m starting to feel that it’s not safe and I worry about her. In home care in my area is very expensive, but I’ve seen that the price goes down the further away I look. Is this wrong? I’m having a tough time with this. Any advice/suggestions would be appreciated!
OP, my friends' mother lived off Aragon. When her dementia progressed to her wandering about, the family eventually placed her in a small board and care that handled MC and also handled hospice. The only negative interaction my friends had was when she and hospice doctor had collaborated on not force-feeding the mom at the end, and then she walks in the next day and there are workers trying to syringe feed the mom.
If Mom were in care somewhere in Modesto, Turlock etc., my friend would not just be able to check on her like that.
The B&C was about $5,000 in 2014. They rented mom's house out to pay for it. This could honestly be a better option.
My FIL finally fell and lay there for several days before MIL called 911. There was little food in the house (she wouldn’t leave - it was at the beginning of the pandemic in July 2020 & she hadn’t left the house in 2 years). FIL went to the hospital and the hospital kept calling MIL who refused to answer the phone. A cousin called and DH went to solve the problems.
Once FIL passed and all the funeral, etc. resolved, MIL began to show the delusions/hallucinations she was having all along. She thought the house was haunted. It was really uninhabitable. She couldn’t see it. Her dog became Sick and almost died. She wanted to move in with us. We didn’t want her after the way she treated DH the last 25 years. The dog could not move to our house as it is not house trained or trainable and we already have dogs. She moved to a hotel for a month, then her sister’s place and then the cousin told DH that he had to do something because he was going to have the police take her.
so she is at assisted living 1/2 an hour from where she used to live. The price is better than where we live and our presence sets her off. She does not have dementia, but some mental conditions. It appears to look like dementia. We asked for an evaluation by a psychiatrist or neurologist, because it appears she has many symptoms similar to dementia with the sensation of bugs under her skin, severe hoarding (which she can’t do now-no access to her funds), delusions, hallucinations, doesn’t like to leave her room, etc. She is very angry with us but we know she is safe and that no unnecessary calls are being made to the police and that she is living in more sanitary conditions.
if cost is an issue, look to where you can afford but also ensure that you pick as good a quality place as possible. We did and the services she receives are good, because we could never get her to agree to go to the doctor. Now the doctors come to her.
My mom has dementia. My stepdad's health was declining and I had to make several trips from Colorado to Oregon to help stay with my mom while he was in the hospital and also when he was at home recuperating. He did not think mom could stay by herself for even one night. In March of 2019 we moved them here to be near us and my older sister, too. I found a nice duplex home in an over 55 community for them. He was worse than we knew & 6 months later he died. We thought for sure, we would have to place mom in a facility of some kind. Mom cannot live with either one of us. We have too many stairs, sister lives in a 1 bedroom apartment. We decided to take turns going over to mom's everyday, but not all day long, and just let her stay at home to see how it went.
That was 2 1/2 years ago. We take her meals, don't let her cook, she doesn't even try; she does enjoy doing laundry, watches tv, goes through all drawers and cabinets everyday because she forgets what's there. I had my husband install a Ring camera on the front porch so I can see if she goes out. I bought an automated pill box so she can take her meds on time. There are other things we have to mitigate as they come along, and we know someday she will not be able to be alone, but for now it's working. None of us ever dreamed she could live alone this long, but as long as we can do this, we will.
biggest thing I missed doing, .. visit numerous homes in the area . Find out if they have a self prepay period before Medicaid kicks in. I didn’t know , it would have opened up selection criteria for where I placed my mom here. I was fortunate and love where my mom is…my mom doesn’t have the year of self pay funds, close… the memory care has taken in her in knowing this…
so if your mom will be running out of money, look at places near you , does it matter if it happens next year, or three years from now ? And you may have to move her again…
as things start to go south physically and mentally with your mom, your required assistance elevates.. trust me, much easier to handle nearby .. I did lots of Amazon delivery, costco delivery…
good luck with your decisions…
Now to care. Are your mother's legal documents in place, i.e. Will/Trust, Health Care Proxy, durable POA? If not, run - don't walk - to a qualified elder care attorney. If her finances allow, why not hire someone local to care for her? It would be cheaper than facility care, and you can be close by to monitor her. In my case, I did the reverse - paid for local care during the day, and took turns sleeping there at night. My brothers helped out a little with the overnights but most of it was on me. Towards the end, as funds were depleted, and Mom needed more care, we applied for Medicaid assistance. That's why it's important to have all legal and financial documents in place ASAP.
In my opinion, having your Mom 2 hours away is not an optimal solution as you are clearly bonded and won't be able to see each other nearly as often. Nor will you be able to monitor her needs from so far away. Think about it.
If she needs 24/7 care, an AL may not be the right type of care. Then you would be starting all over when they tell you they can't meet her care requirements. This does happen or they raise the rates and are still not providing the level of care she needs.
Your local council on aging can help you get her assessed so you are searching for the appropriate facility.
Are you willing to make a 2-hr drive there and back every week or 2 weeks into the future for X number of years? Are you willing to endure the stress of having to trust the facility in what they say and do 90% of the time when there are problems to resolve?
But trying to "keep her at home" means that you and your husband will eventually be orbiting around her -- and her house -- for X number of years. And managing the in-home aids. Is her home ADA compliant? Does she have a shower she can get into? What if she starts to wander at night? Not trying to scare you but these are practical matters that DO occur and you don't want to be surprised by them and then scramble to solve them in crisis mode.
Does she qualify for an Elder Waiver (if your state has one)? Elder Waivers can cover some of the cost of AL in some states. Medicaid pays for 100% of LTC but in some states will also pay for some AL and MC. You need to talk to an estate planning/elder law attorney and/or a Medicaid Planner for your state since rules vary. Also go to your county's Dept of Health and Human Services website under social services then elder care to find out more. If your mother is low income she may qualify for an in-home assessment for some services now. It probably feels very overwhelming right now but it will be important to get a panoramic view of all the options since what you decide today will impact the caregiving in the future.
Which brings me to what my friends did. The wife's mom had dementia and started wandering at night. They moved her to a board-and-care around Hillsdale after telling her that her house had rats. The house was then cleaned out and rented to finance Mom's then $5,000/month stay in a MC board and care from like 2012-2016.
Long story short, the inheritance was intact and mom was probably cared for with as much or more quality than an Atria Burlingame without the family having to do it directly. Given appreciation, prop 13 and all that, the rental route/board and care may be the best way to go.
If you have the funds I would advise against the distance but this could be my nature. I am an only child. I have had my mother in 2 facilities in different states. The present one is less greatly due to the state we are in.
I am and have been 5 to 10 minutes away from her. I realize this is pretty ideal and hope she can remain where she is as she declines. The familiarity is important to her. I have been able to get to her quickly when need be. When she has been hospitalized on multiple occasions I can get to the hospital frequently. When family visit all from different states they see her often. If she were several hours away all of this would be complicated. I have 4 young grandchildren and she greatly enjoys seeing them but due to where they live that is only twice a year yet if she were farther away those visits would be a production.
There is peace of mind knowing you can see your parent more easily. If there are issues that are problematic one can try to stay on top of them if one lives closer.
It is rarely ideal having a parent in a facility but then it can also be rarely ideal to witness a parent's decline. Proximity to them can be a blessing unless the relationship is very toxic. I hope uou find the suitable decision for all your needs.
Then, once she is in a safe location, you can take some deep breaths & start to weigh up all the options out there.