Back again. I had posted two previous topics in the last months about my mom suddenly coming down with what seemed like dementia/another stroke (after having had one in 2012, paralyzed entire left side of her body) and me, and practically only me, having been her caretaker 24/7 the past 5 years.
Finally got her to the hospital and sorted out, got her to a rehab center. Everything went/was going well, even the whole having to be there for Christmas issue. Most of my family showed up and spent a few hours with her to the point she got so overwhelmed after about 2 hours she said we could go and she wanted to get some rest (completely unlike her, normally she'd be bargaining with some of us to stay/get her out) so it went a lot better than expected and thought she was getting more comfortable there. Plus it probably helped that I've been there pretty much every single day/night until around 9 - 10pm since she's been in this condition/recovery.
Fast-forward about a week ago, she's gotten significantly better but still seems like she can't stand or sit up on her own properly (she did this stuff perfectly before she got sick, was even able to transfer herself from bed to chair and such half the time.) According to her worker a lot of the more demanding therapy (the stuff that would get her to stand and such again) she was refusing to do so they discontinued it, and said she's still on RNA (bed-related therapy) but believe she's gotten as good as/far as she can with it.
Case worker wants to discharge her in the next month but the question is where. Right now we're weighing our options, talking to family, and deciding if it's going to be home or in some facility. Obviously, the initial plan and what we wanted was to get her home but if she can't stand or do even half the things she did before I don't know how I can. I honestly don't know if I can still lift/help her up at the point (I'm worried and guessing it's most likely a no, since the nurses seem to have a hard time doing it as a group) I was at my limits taking care of her on my own before with her slight independence, I have no idea how I'll be able to with her still current weakness and being in bed majority of the time, I'm not even strong even to turn her on my own to make sure she doesn't get any bed-related illness if that is the case.
And now it seems like it's all coming down to me, basically an ultimatum from everyone including my family: Well if you want to try and take care of her in this condition (me, by myself) then she can go home otherwise no.
I don't know what to do and am emotionally and mentally destroyed by it all, of course I'd want to take her home but not if my ability to take care of her is now severely limited. On top of it I went to see a Dr for my chronic, daily back pain where I wake up in excruciating pain every morning (had it about 3 years now, finally had the time to go with her currently in PT) and I haven't gone to see any specialist to confirm but it doesn't sound good, including no lifting over 20lbs while this all gets sorted as to not risk further damage.
I've never wanted her to be unhappy or in a home, that's why I've given up my entire life thus far to take care of her, but it seems like it's gotten to a point that I PHYSICALLY cannot do it anymore. I haven't and don't know how I'd even begin to tell her I can't take care of her anymore. The affect it's having on my health is no help, constant anxiety/feeling like I'm going to have panic attack when I even consider it, wanting to turn to drinking (never been a drinker, have barely ever touched alcohol in my life) just to get some kind of escape from the horrific emotion and mental toll it's taking on me. I feel like I'm going absolutely insane, and we (or I guess I) haven't even come to a decision yet.
I don't understand how anyone is able to come/make this decision, how they're able to handle it, because I haven't even made it yet and feels like it's already about to cause my death.
Your mom is safe, cared for and IN A BED.
Her current facility can only send her somewhere that they seem a "safe discharge".
Home is no longer safe. One person cannot care for a bed ridden patient.
This does not come down to your "choice". It comes down to incontrovertible fact.
Please call your doctor and get a referral to a social worker or therapist. Talk to your doctor about your anxiety and panic. You need help in negotiating this transition from being your moms permanent caregiver.
And as CM says, sit down and have a talk with mom's worker. Make it clear that mom cannot safely come home.
Eventually my mom figured it out herself that she needed nursing care. Which made it a little easier. She still wasn't happy about it and it was devastating to me to have to see her in a nursing home. And to be honest, if my siblings had helped more we may have been able to give it a go with mom at home. But that fantasy never played out. So, screw the guilt. It's unfounded. You sound like you are at your breaking point and as others have said so adroitly you need to save you before you can save someone else and it was never supposed to be your responsibility totally. You just made it so. Give yourself a break.
You've pretty much answered this question with your description. You are physically unable to continue caring for her at this new level of need. Frankly, with your back issues you weren't really able to do it before and appear to have caused
yourself some serious damage.
If you need a "note from the doctor" then get that and take this burden of guilt
off your shoulders. Not being able to physically care for a bed ridden parent
should not be a source of shame, but rather an impetus to find her the best
care situation that she can afford.
Good luck!!!
Have you tried to get some counceling? Are their senior services in your area? You may want to consider retaining a lawyer who practices senior law and show him all this post and response. What you are going through is, what I would say, typical of a caregiver having to make life altering decisions while having siblings who sit back and watch. My situation is my brother's children, all adults, live within a few miles from the nursing home I had to place my brother, they never visit him or try to help me. He has been there 3 years and tells me they visit all the time. Breaks my heart completely. Our sister lives in Hawaii. So, her help is extremely limited.
I had to make the decision to place him and where. He was in and out of the hospitial more than not - which is why the decision had to be made. He was in a unit in Assisted Living and I paid the rent. In one year he was actually in his unit for 5 weeks. I was ripped apart with guilt, but knew I could not give him the care he required. My life is and has been for 7 years, on hold - I am not a spring chicken and do feel resentful that I am the "chosen one" - especially where his kids live so close.
I found, through Senior Services, a class that helped me understand his condition and what he was going through with the dementia. Maybe there is a school or hospital that can give you knowledge to help you understand this isn't your soul responsibility and how to obtain the help you need.
One last thing, is there a social worker involved? If there isn't there should be - I would advise to get one immediately. He/She will guide you and support you on how to rid yourself of this guilt and how to deal with her moving into a Nursing Home.
God Bless you. Stay strong. I will pray you get your life back. I would be interested to know how this all plays out for you.
we committed to caring for our LO which includes their best interest; if we are not physically able to 'lift' or 'support' them (and as their abilities decline, not many can fly solo), then aren't we increasing the potential for injuries to be much worse if they occur? They stumble we cannot properly catch, they're confused and tend to wander and we don't hear the front door open because we were in the other room cleaning up urine,? I have noticed that staff in facilities usually work in teams of two when moving, adjusting etc patients... plus in facilities, the entrance and exits are limited to one or two and monitored and/or auto lock to activate them. I'm starting to realize that if mom goes into a facility instead of home, I will still be caring for her, just not in her home. And as in any point in life, plans do change to no fault of our own per se. Plus, as a caregiver, if you reach burn out, it is not possible to care for them properly because mentally you sorta "check out". Hang in there my friend.
xoxo