cwillie, I told my mom today when she was heading into the loo (the wrong one that is not adapted) that I will get the handsome firefighters out to hoist her off the loo, and she laughed and said, is this not the right one? And then she headed towards one of the TWO that are her loo that are adapted with no argument or fuss. Maybe she also had that nice mental picture of a couple of handsome men hoisting her off the toilet with her underwear down and she moved on. So it worked!
Maybe a call for assistance from the local fire/ems is in order. I imagine being helped from the john by a couple of burly strangers would drive that lesson home ;)
Ha, we're back again with the using the one not adapted toilet in the house and getting stuck on it. Really? Explained to my mom that I have to HOIST her up off the toilet when she uses the one toilet in the house that is not adapted so she can get up off it easily. Hubbie is off to the shop to get one of those little locks for the outside so at least she feels resistance when she tugs at the door. She has TWO toilets. She is capable of walking to them. The rest of us four people share ONE toilet. It's a stress when you know your loved one can accomplish something, and they have everything at their fingertips, and they do not avail themselves of it.
The exhausting toggling between Dementia Reality and Real Reality. The on-demand suspension of my IQ, my opinions and my full range of language -- just to navigate XX hours or XX days with my demented mother -- took something out of me that I still can't quantify.
All I know is that it wore me down. And aged me. And left a scar, of sorts.
My mother passed away last year. So I am exempt from wearing those two hats. But it has been a struggle to restore my old self. Still struggling.
I'll add in one more thing: The sadness and worries of growing old yourself. I don't pass judgement on those who've decided to put their aging loved ones in "the home" because, frankly, seeing them decline is a reflection of your mortality. No one likes to deal with the realities of old age. We all think we're going to be in good health until the end. The fact that I may live long but have no quality of life does worry me. This is why I support euthanasia, obviously under the review of a team of physicians. I recognize euthanasia is a sensitive topic.
Diddo on all responses thus far. I'll also add in: Dreaming of the day when you can get your life back - and not wasting a moment of this as you are more than ready to dive in to "living life" while making-up for all the lost time. You have a much greater appreciation of your remaining life. You learn what's truly important and what's a waste of your time.
12 years of my FIL living with us, and him being a complete Narcissist, which make his slow decline even that much harder to deal with, as we are aging too! Frustration that we haven't had a vacation for over 7 years, and that my no good brother and sister in law, do absolutely nothing to help whatsoever! They of course call every now and then, just to see how far their Dad has declined, and how close to death he is, in hopes that there may be some inheritance coming their way, but Oopsie, nope, they don't know yet, but they both were cut out of his Will years ago, as they both did everything in their power to rob steal as much of his money as they could, so when the time comes, it's going to be real interesting! In the mean time, our own lives are being robbed from us, but they don't give a crap! We are just the idiots who took on this responsibility, while they get to go on about their daily lives without a care in the world! They disgust me! Thank God, my own family was Nothing like this, we all worked together as a team, caring for our parents through very debilitating illnesses, right to the end. I'm so proud of my own siblings, but somehow, it makes our current situation even that much worse, knowing that it could have been so much easier had my husband's siblings pitched in, even a little, but that wasn't to be, and now I resent them beyond words!
When your mom ises the one toilet in the house that is not adapted and gets stuck on the toilet and your dad is sitting outside at the same time waiting for a glass of water. Thought I would mention a funny one😀
My 93 year old mother with Alzheimer's and stage 3 bladder cancer - living a longer than expected. I have her on the waiting list for Assisted Living - what if we run out of money (she doesn't have much). My estranged sibling taking me to court when its all over since there won't be an inheritance left (mom gave her money for years and that has stopped). My mother never appreciating anything I have done for her - since in her mind she is fine and doesn't live with me (its been a year and a half).
Siblings never being around to help and not showing any genuine concern for their elderly parents, but then coming out of hibernation when the parents pass away because of the inheritance.
Not just with dementia but anything related to age decline that becomes difficult to manage. There is the major stress of uncertainty, and with the stress comes the caregivers own major health issues.... and will I be one of the 40% of caregivers who pass leaving behind my parent. Every day I am on high stress alert and here I am not a hands-on caregiver but logistical caregiver.
I agree with all the above and add Isolation Loss of relationships - I have found family members who I once had good relationships with now avoid me because of possibly guilt for not helping me or fear that they will get sucked into helping me somehow. Sadness of seeing my parent deteriorate and .loss of having them be there for me. Underline Loneliness for me and loss of freedom and loss of self.
For me its seeing my Mom aggitated and feeling that nobody believes her when she sees things or doesn't believe she is in her own home. Then seeing my dad looking so sad knowing the love of his life is fading away. The other stuff is easy compared....
No private time. Interrupted sleep. No hope for improvement. Financial worries. No social life. Idiotic comments from people who have no clue about dementia. Loneliness.
Lack of privacy.. not always in the sence of someone walking in on us.. but just having time to be blissfully ALONE!! I am an only child, and solitary by nature ( something my hubs luckily gets) and I miss my private time...
After 8 years of being the primary caregiver while working 50 plus hour weeks I had to move my 92 year old mom to a memory care unit in February following numerous falls and her refusal to accept caregivers in the house while I was at work
Now I worry about her all the time as she has fallen there and is left in the same clothes overnight and has had 3 UTIs. - I'm now paying for personal aides 12 hours a day (which we cannot afford). I keep thinking I should bring her home and try one more time but her doctor says not to do so. She knows she has been locked up and just wants to come home -
Yes, frustration and hopelessness and mental exhaustion. I would also add having to suppress anger you feel sometimes (because you know they can't help being difficult). Also suppressing the normal responses such as reasoning with them or arguing with them when they exhibit bad or self destructive behavior. Guilt is also a stressor - guilt over your own feelings when you get angry, frustrated or feel powerless because you can't help them and you can't make them happy although they expect you to.
The list is too long to type out on an iPad but the top three are exhaustion, frustration and hopelessness because there is no improvement - things can get worst with little effort but great effort doesn't make things better
All I know is that it wore me down. And aged me. And left a scar, of sorts.
My mother passed away last year. So I am exempt from wearing those two hats. But it has been a struggle to restore my old self. Still struggling.
Isolation
Loss of relationships - I have found family members who I once had good relationships with now avoid me because of possibly guilt for not helping me or fear that they will get sucked into helping me somehow.
Sadness of seeing my parent deteriorate and .loss of having them be there for me.
Underline Loneliness for me and loss of freedom and loss of self.
Interrupted sleep.
No hope for improvement.
Financial worries.
No social life.
Idiotic comments from people who have no clue about dementia.
Loneliness.
You are right about both anger and guilt
After 8 years of being the primary caregiver while working 50 plus hour weeks I had to move my 92 year old mom to a memory care unit in February following numerous falls and her refusal to accept caregivers in the house while I was at work
Now I worry about her all the time as she has fallen there and is left in the same clothes overnight and has had 3 UTIs. - I'm now paying for personal aides 12 hours a day (which we cannot afford). I keep thinking I should bring her home and try one more time but her doctor says not to do so. She knows she has been locked up and just wants to come home -
Because if it was a full time caregiver they would know we don't have the time to make a list that long! Lol