My wife Linda has cancer in remission, Parkinson's with on-set-dementia. We care for her @ home but have noticed a negative change in the dementia. On a good day she can take care of 50% of her needs...on a difficult day she needs care with personal needs around movement & the bathroom. Linda sleeps through the night without issues 50%. She takes a 2-3 hour nap in the late morning and late afternoon. On good days we can go shopping and/or out to eat.
My husband has been in a nursing home for about a year. He was evaluated for hospice after falling and fracturing his hip. They said he wasn't eligible Prior to that he had been in and out of hospitals for his many chronic medical conditions, then back home where I took care of him.It took me a long time to get used to the idea that when he needs some sort of hands on care, I wait outside the curtain while he is bathed and dressed by other, stronger and more skilled hands. Id also like to says that my husband was isolated at home. Due to a depression he rarely interacted with others. In the nursing home he is part of a community and is thriving. I am so thankful to the nursing home for the excellent care they provide.
Given your wife's presumed prognosis, my advice is, if you haven't already, to visit with an elder law attorney to get your 'house in order'. Visit care facilities and choose one. Even if you don't wind up moving your wife anytime soon, it's better to make the decision with clarity instead of in the heat of a crisis.
We (me and my Mom) had been deliberating about taking my Dad to a care facility for quite a while. My Dad was having a lot of trouble walking around with the walker and acting independently in general. Mentally, Dad was a bit forgetful, but otherwise fine; heart disease, arthritis, eyesight, and weakness were the primary issues. I had seen evidence that Mom was getting tired and distracted for months, although I didn't want to admit it. She seemed otherwise quite healthy. In early May, it was clear that Mom needed some help, as she was clearly, physically, unable to deal with some of Dad's issues, seemed a bit disorganized, and she was beginning to feel numbness in her left leg (and soon to be her left arm). Neither of us wanted to send him to a care facility, but it seemed like that was the only choice, at least as a temporary solution. We immediately had some concerns; it wasn't long before they put an alarm on him that discouraged him from moving around (it has since been removed). This has been my biggest beef with them to date, but otherwise the facility seems pretty decent. Unfortunately, it wasn't long after that that we discovered primarily *why* Mom was having issues: glioblastoma. Brain cancer affects people differently based upon the location of the tumor, and, unfortunately, Mom's tumor was close to the part of the brain that controls motor skills. It wasn't long after that diagnosis that Mom was unable to walk, and she hasn't walked since. Long story short, after all the operations, treatments, etc, she's currently at the same facility as Dad, but also with hospice care.
I know it's not good to second guess yourself on these things, after all, the past cannot be undone, but I do have to wonder occasionally what wisdom I could take from all of this. If we had somehow done things "differently", would Mom be in better shape? Was Mom so busy taking care of Dad that she didn't notice the slow but increasing deterioration in her own life? Did I give Mom enough attention? How much was I blinded by my weird belief that my Mom would not, *could not*, get cancer? (Yes, that's another interesting story and certainly a bizarre belief, but too far of topic to get into here.) Did I avoid earlier action because some thoughts of some possibilities were just too scary? I didn't think I should be involved in this kind of decision (to send Dad to a facility), but Mom clearly needed my approval. Had I nudged her to put Dad in a facility earlier, would the outcome, at least up until now, been any better, for everybody, or even for anybody? I don't know.
My parents certainly had the money to send both of them to a facility for a few years, but it *is* expensive, and that's primarily why we waited so long. Had we put in Dad earlier, would Mom have been diagnosed earlier? Would she have even gotten to the doctor earlier? It took two visits to a general practitioner before she even was scanned with an MRI, and even then, given the tumor's size, the tumor was relatively asymptomatic besides the numbness. Had Mom been diagnosed earlier, they might could have removed all identifiable parts of the tumor, but with this kind of cancer, even that's no safe guarantee, as glioblastoma cells tend to migrate all over the brain, even outside the tumor, and the tumors often do reoccur. Had we put in Dad earlier, I can't say things would have been better for him, either. While it's certainly better that his likelihood of falling has diminished, he can only stand up with assistance now. His eyesight has gotten worse, although, that probably would have happened anyway. Had we put him in an assisted living facility, rather than a nursing home, would he have been able to stay there? And given that, if the sequence of events was otherwise nearly the same, Mom was moved to a nursing facility due to the cancer affecting her, would I have been forced to make the choice to move him *again*?
I realize this whole post is a bit of a side story, but I just wanted to give an example of *why* it is so hard to determine this in any objective sense. I can't even determine, looking back, if it would have been better to have moved to a facility earlier, or if we're just lucky that things happened in the way that they *did*.
In my opinion, and I advise this to everyone, I would contact you local caregiver alliance agency, every county has one, and get some counseling with a social worker there. In most cases it is free, and they can also help you place your life partner, if that is the final choice you make. I have taken care of someone dear to me for 10 years, she has traumatic brain injury, I go to my local caregivers alliance agency for meetings, and I meet once a month with a counselor there. There are amazing, helpful, and have experience with these difficult situations.