Both my parents now live with us in an attached two bedroom add on. They were in an independent living facility but hated it. Didn’t socialize, found it depressing. And it was exhausting running there all the time taking care of things because they wouldn’t utilize the help available. They are both in different phases of dementia but still physically able. Having them here is more convenient but the mental exhaustion of 24/7 is getting to me and my husband. Answering Mom’s same questions over and over. Keeping them both engaged. My fathers over thinking every little thing just to make conversation. I feel I need a trained professional to come in maybe once a week to spend time and engage with them. Of course they disagree. They’re in their 80’s. I’m 62. Hubs is 63. We want to enjoy some of the so called golden years but I feel like I’m aging before my own eyes!
The other is hiring someone for the times or days you want them to come in to take over some of your parents care.
I think you are allowing two people to make decisions they no longer are able to make. You have to set boundries. It will be hard, but its now what they need not what they want. And u will wear yourself out trying to do it all. And it will become harder as they decline. There comes a time when u have waited too long to place them. You should have refused to do for them when they could have utilized what was available. My Mom wanted me to drive her to Daycare. 18 mile round trip 2x a day. I said no, a bus was available. Picked her up at 8, dropped her off at 2:30. 3x a week. As soon as she was on the bus. I showered and off my DH and I went. (DH would have driven her but I told him that took an hr out of our time)
Believe me, I know how hard this is. I was the "good" daughter. But I realized I was not a Caregiver and the more time I gave to myself the better. Eventually, I placed Mom in an AL right up the street. She was pretty much into her Dementia and adjusted well. She had the whole facility to explore. My house, she had a room and bath. I have a split level so no exploring.
I think you make a grave mistake in having your parents in charge of so much. They are no longer independent, but are in fact dependent on you, and there are two of them.
I am uncertain how capable your parents are of understanding? Is there dementia in them both? But it needs to be made clear now that the help hired is hired BY you and FOR YOU, and that you NEED this help in order to be able to continue to function in this capacity. Otherwise it will be back to Assisted Living, and with many fewer visits, as those too are taxing. You are at present voluntarily giving up what is some of the best years of your life for them, to be frank. At least they were for me. I am 16 years retired and they have been SWEET. I would make it clear that there is no way to know how long you will be able to do this, or how completely.
IF both parents are too demented to understand the above then I must tell you that you should consider sitting in front of the mirror and telling yourself. You should know going into all this that there is no guarantee you will be able to do it for any certain amount of time. Things will not get easier and will in fact become a good deal more difficult. If financially you could afford this you are lucky indeed, but you will not be able to continue on mentally and physically forever. You need to get counseling now, or do whatever you can with support groups and etc. to learn to ACCEPT the truth of this. There is no way to make this easy, happy or good.
So sorry, but this is not something that I could do, and I knew that when my brother was diagnosed with probable early Lewy's dementia. There is not a better man on the face of the earth, a more deserving one. I am sorry for it, but I was born without the Saint gene; it was never a question to me that I could begin to do this, and I knew that to my bones in the very beginning. Only ONE day did it enter my head "If you were any kind of a person at all, you would move there, get a trailer next door, and give this best man ever the care he needs until he is gone". It took about 1 minute to come to acceptance that for whatever the reason, I am not that kind of a strong person. That I would do what I could, manage finances, protect what monies he has, and visit when I could, but that I wasn't that person. If nothing else, I know myself.
I wish you luck. I hope you will update us.
Having a companion in for a few hours a week is a good idea. You get a break and they also get a break.
Respite is usually considered a week or more. Typically at a facility but you can also have someone come in for a period of time for respite. This would allow you to get a way for a little vacation.
Medicare does pay for Respite IF the person is on Hospice.
If your parents (one or both) is not on Hospice you might want to call and find out if they are eligible. You would not only get supplies and equipment but you would get help weekly with bathing. Also you will have the option to request a volunteer that would come in and sit with them while you can run out and get some errands done. (It is a requirement of Medicare that a % of patient cost is provided by volunteers so all Hospice offer volunteers if you need or want them)
I also have to ask how long were they in Independent Living? And with Dementia Independent Living might not be a good fit at this point they may need Memory Care.
It can take a while to adjust to "community" living but staff in Memory Care encourage residents to engage.
It takes time to make that adjustment. Many folks with dementia have concurrent anxiety and depression that can be eased by meds.
Might a different facility be a better fit?