I've read so much here and the fellowship and support I see warms my heart. However, it also reinforces something that's been, perhaps, the cornerstone of my struggle regarding my Mom and her future care. I'm hoping I might receive some guidance as I'm feeling as far out of sorts as I could ever feel about her future. I can barely think about the subject without being overcome with emotions.
A little background:
I'm almost 40, married and have young children. It's been a good thing to have my mother live with us for the last few years - she's separated from my father and there's no support in that manner. However, my mother is not of advanced, mature years compared to other stories of, for example, an 80 year old parent who's physical health issues might be evident (not to suggest this is wasy for anyone). Quite the contrary, my mother is not quite 60, a retired professional woman who is as smart and intelligent as any person I know. However, her age isn't the largest denominator in why I'm concerned. It's her health. She suffers from fibromyalgia and problems that springboard from that (old knee problems are now severe, old shoulder and neck injuries much worse than ever, etc.). Sufferers of fibro also find that, in addition to the constant pain they also suffer from "brain fog" - essentially a diminished ability to think as clearly as one would like (imagine what it's like when you first wake up from sleep in the morning... groggy, a bit grey, not entirely "with it.").
It's for these reasons it's been a treat, a pleasure, and a comfort to have my Mom live with us. I work from home and am the primary parent taking care of our children while my wife is at work. It's been ideal that I'm here to keep an eye on Mom rather than working away from the home.
However, we've reached a point where she has taken several falls in her basement "apartment." Several have been close calls to more serious injuries and one involved a trip to the emergency room requiring staples in her head (essentially sutures). She rarely leaves the house, requires a walker to go for her walks, sometimes becomes disoriented (sometimes the brain fog kicks in while she's out and about), and she can barely get up the stairs from the basement to come out of the house. Sometimes she simply trips, looses her balance, her knees buckle, or similar causing her to fall.
I no longer sleep in bed with my wife so that I might, instead, sleep on the floor of our living room so I can be nearer the downstairs door and in a better position to hear her if she takes a fall and needs my help. She now has a whistle she wears around her neck just in case. However, I, of course, worry that some "thuds and thumps" I hear may be serious - making her unable to blow her whistle to signal me for help. Most of the time it's nothing... she's a night owl contrary to the rest of the house and is usually just bumping around doing normal things. However, sometimes it's been a fall. More than a few times I've had to go down and help her off the floor as she is overweight and unable to lift herself (and her poor knees make it hard, too).
I'm a former firefighter and perfectly able to lift heavy weight and even trained in patient transport. However, I've found too many occasions where I injured myself for the sake of getting my Mother off the floor when she couldn't help herself - as it beats the alternative of times where I came down later the next day to find she'd fallen hours earlier and was merely waiting for me to come down and visit her - or eventually come down to the laundry room. Sometimes she's fallen several hours earlier and had to resort to sleeping in the floor... waiting for somebody in the house to stumble across her.
Needless to say I barely sleep anymore. I'm on such high alert that I vigorously wake myself up at many more noises I hear at night and often discreetly investigate by going downstairs, sometimes without her realizing I've checked in on her. This happens usually every night or two... sometimes more than once in a night, typically 5-6 times a week. I'm often sleep deprived as it takes me a long time to settle back down after startling myself awake to thuds and thumps I hear and I know I'm surely missing quality sleep because I try to maintain a vigil with "one ear open" as it were. Going up and down stairs to check on her means I often take an hour or two to fall back asleep.
The one time we discussed these things it went poorly for both of us. I let my worries speak very clearly - as you might have gleaned from what I wrote above. She insisted it was all my choice if I felt the need to do these things - while I insisted that my concern for her leaves me no choice but to worry.
My wife is concerned for all of us - my Mom and myself. She's very supportive and wants to make sure she respects the "it's your Mother" position but she's equally worried about my Mom's declining situation. We simply can't afford to make our househould basement into the model of handicap accessibilty or safety. Mom Mom would stumble and fall in an empty room - handles, rails, etc. only solve some of the problem.
At this point, I also barely leave the house and I have two young children who want to go out and play (requiring my supervision). Our family rarely goes away for many hours at a time in case my Mom takes a spill and would possibly be injured for very long without someone being home. Our worst fear happened while we were on vacation - she fell. Fortunately my Sister was staying over during that time but it's a miracle she, herself, wasn't away at work. Again, thank goodness I work from home. However, I realize now I'm feeling compelled to stay close and whether it's justified or not, it's interfering with other things like taking the kids to the park for a few hours, to the mall for an afternoon, etc.
I simply don't know how much is my own imposed mental hangups, emotional inability to see the situation for what it is, or maybe I'm seeing a situation somewhat clearly and worried the next step will come because of a crisis... rather than planning - for her future?
My ego isn't an issue. Please, if anyone has any guidance - even to tell me I posted in the wrong place and where I should instead go, I'd be grateful. I've tears streaming down my face now having typed all this and I can't find anyone who can related to me because I'm not talking about an 80 year old Mother who fits some stereotype of a person considering assisted living. People have no advice for me because of we seem to be counter-stereotypical. Her age brings an element that's hard to reconcile with the usual advice - she's not quite 60. Her moments of full-focus, clear-headedness, do too - she's not requiring me to exert authority over her. It's just when everything conspires against her health and mental ability (sometimes for days on end) I feel like I'm putting as much concern into her well-being as I did when my children were infants... except my Mom's future isn't expected to become improved or independent... quite the opposite.
She requires my sister to visit and help with laundry and to get her groceries (as my wife and I are about maxed-out with time ourselves). She can't often deal with making phone calls to deal with subjects about bills, insurance, etc. as it's mentally and emotionally too much - she just isn't up to it. Essentially, we're having to take care of her for all her essential needs and watch over her for safety - heartbreaking for a woman who was as strong and professional as any person I've ever known. We're just worried her days living in this househould environment are nearing an end purely for safety reasons but I'm feeling guilty as well that I'm not doing enough but not sure what more I could do? I think I'm letting the toll come out of me so that it doesn't come out of my Mom or family more than it already has? I don't know if I have a sound perspective anymore due to my worry, lack of sleep, and guilt?
She loves being in the same home as her grand children - she's even said it's the highlight of her day when she can see them, but there are many days in a row where she simply doesn't feel up to seeing them. I don't know if the proposition of finding a new assisted living situation away from her grand children would be something she could cope with? I feel torn between the emotional joy that brings her but also as-if my kids are emotionally held hostage that I mustn't do anything to separate my Mom from them?
As for possibly heading toward some type of assisted living we're worried about her ability to find any options due to her living entirely on disability and medicare, her requirement for several important medications, etc. This is even if I could figure out if I'm over-reacting, making matters worse, or even being able to talk to her.
Thank you so much, for your time in reading. I could only hope I might be able to help somone else here, too, but I don't think I have much to offer - obviously I'm not well-equipped to sort much out in my own situation.