I'm tempted to start with my grandmother, who moved in with us about 10 years before she died. But that was my parents' experience being caregivers, so I'll leave it be. Suffice to say it was not easy on either my Mum or Dad.
My Dad moved to Vancouver when Montreal winters became too much for him, leaving behind all the rest of the family. He had a ground level studio suite in the same house as us, but separate, for 10+ years, and for the first 5 or so was quite self-sufficient. He had dinner with us, but took care of his own breakfast and lunch, and toodled around the neighbourhood at will. Then he had gall bladder surgery, and the downward spiral began.
The recovery from that was long, and he lost a lot of ground. Then followed assorted other episodes, many of which weren't all that big a deal of themselves, but cumulatively, they contributed to the downward spiral. By the late 90s, he was dependent on me to take him anywhere, and by 2001 he couldn't do the stairs anymore to come up to our place.
We began bringing dinner down to him, and brunch on the weekends. Taking him out anywhere was a major ordeal, and eventually we stopped doing it.
He had his share of health issues, not least of which was a spinal stenosis which, had he been 40 years younger, could probably have been dealt with surgically, but by that point in his life was too far advanced -- so: major mobility problems; circulatory problems; then he got a pacemaker; then he had prostate cancer...and on it goes. And who ferried him from doctor to hospital to wherever?
Somewhere along the way, he asked his doctor about an alternative treatment for something, and got not just a negative response, but a total unwillingness to discuss why the negative response. So he found a new doctor. At a time when getting out was becoming more and more of an ordeal, it was wonderful that this new person actually specialized in geriatric patients and made house calls! Little did we know that he would do ANYTHING to keep the patient in the home, whether that was a good thing or not.
During his reign, Dad had a number of medical issues, requiring various running around, and various medications. The running around of course was during normal office hours (did I mention I was working 9-5?) and the meds seemed too often to give him the runs. I got a lot of 3-in-the-morning wake ups to deal with that, and not a lot of support from the doctor.
Don't need all the gory details. Also during this phase, we managed to get some homecare support -- right! One hour a day, five days a week, at the most generous, to deal with bathing and dressing. The real caregiving phase was about four years. Things came to a head in June 2002, and my brother, bless his heart, suggested to Dad that "maybe, until you're over this hump, it would be an idea to go into a nursing home" and Dad, bless his heart, hesitated only a moment before saying, "yes, perhaps, but if I do that, it'll be permanent" and got off the phone and asked me to get it under way.
I spent my vacation in 2002 literally looking after him until we could get an extended care placement. The care had become a 24/7 thing. There was nothing he could do for himself in the home situation, aside from eating. We got the placement at the end of July.
He has been in extended care for 3 years plus, and it's the best thing that happened to him in a lot of years. He has friends and activities, like he did not have at home, and all the care he needs.
He's sliding now. He could have another 10 years, for all I know, or he could allow the next frustrating but non-life-threatening thing to take him. It's anybody's guess. I'm basically his only support outside his facility. I see him several times a week, and when he's in good spirits it's great. When he's bored and frustrated because he's not been allowed up for whatever reason (and they're valid ones), it's all I can do to spend an hour with him and get out of there without bursting into tears. And then there are the times when he gets confused -- sometimes it's just events that get mixed up -- sometimes he wakes up from a sleep and, not recognizing the person there, tears a strip off them for something trivial -- and then has to be peeled off the ceiling when he realizes he's been unkind. I love the old guy, but some days...
So, yeah, I know what you're dealing with. PM me if you want to chew the fat.