I just need some words of encouragement from anyone going through the heartbreak of having to think about placing parents. One was just diagnosed with lewy body dementia. Today he called me to come get him and I had to say no. I am so devastated and depressed. He must think I’ve abandoned him.
I know of another case too, where the husband willingly divorced his wife, went into medicaid, gave her power of attorney and all of the assets, as he had accepted the devastation of Lewy Body. know Lewy Body, it progresses in a faster way than the other dementias, causes alot more violence and high risk falls, and perhaps this allows people to come to their senses sooner.
My Dad has late stage Alzheimer's dementia I suspect as that one takes up to two decades, and boy does he still have to win every pissing contest in his care. I gave up on winning pissing contests with him at eight years old. Grateful I do not try to win his pissing contests because now his games or contests about "looking right" involve bed sores, incontinence and what kind of depends to use.
It does not matter what the dementia becomes they all want to go "back home" as part of the dementia. Then when they go "back home" they remain disoriented to the place, and find it just as disturbing. They all want to stay in their home revering in years past like my Dad in the military as a general where they commanded everyone about, and always "right".
They all want to brag about how they did this or that or fixed this problem or lord it over everyone including the daughters and granddaughters and how they will not give control to anyone, not even their next of kin, because they would rather die of a bed sore than lose their control over the "household."
This might sound odd but I envy people with Lewy Body Dementia as often that one gets so out of control and severe much more quickly, usually they get priority for Geri Psych, placement, jail, etc. and they also seem to accept that one more.
Instead I get stuck with waiting for the phone to ring as to the next crisis to deal with, then my Dad showboats his way out and no one wants to deal with angry, large, incontinent man that thinks he still acts as a War General so they let him win his latest pissing contests.
The day my dad gets to the point where a bed sore might consume him from his pissing contests will come. The day where I (or a guardian if I choose) get calls from him begging to come back home, I pray for that day as finally I could say to myself finally he went to where he needs to go. I comfort myself with the thought that his pissing contests he so greatly had to win (according to him) will eventually consume him.
After I’ve left my husband, I remind myself of the disaster I was trying to survive when he was home. It relieves some of the guilt.
As others have responded, it’s his dementia and it requires him to receive care -- that is the reality for both of us.
You can't fix this.
This is aging in America and your parent HAD A LIFE. Now they are sadly having to negotiate these continual losses and you have to stand witness to them.
When my brother was diagnosed with probable early Lewy's he and I desperately moved to protect him and his assets. He was so eloquent about how he felt. Sad that he knew what was coming at him, but relieved I could protect his "stuff" and would be there, and glad to know why he suddenly saw the world so differently to what his life had been. He hoped against hope he would die before it "could fully get me". I hoped so as well. And in one and one half years he DID die of sepsis before Lewy's replaced him with what he feared would be a "pod person".
You are standing witness to grief that is so desperate, so profound, so complete, so devastating and hurtful and you are bound and unable to do a single thing about any of it.
Please consider seeking a bit of therapy from a GOOD cognitive therapist who will give you some tricks of mind to get you through what cannot and will not change. None of the online nonsense. Perhaps a Licensed Social Worker in private practice for life transitions.
Listen to Dr. Laura. No one like her on her Call of the Day podcast, or Sirius radio. She is honest, open, short and sweet, and I think often of her "Not everything can be fixed".
I, as an atheist, have muttered more times the Serenity prayer. Keep it close to hand and use it as your mantra.
Do not try to negate or deflect your parent's agony. Accept it and sympathize and say you are so sorry.
It takes great courage to get through this. It takes awful anxiety and many tears. When your Dad dies you will breathe a sigh of relief that he no longer has to be under torture, and that you no longer have to stand helpless witness to the agony of one you love.
There's nothing on earth that can change this. Nothing. You can sit 24/7 for the duration holding his hand, and you STILL cannot keep at bay what has come for him.
If being sorry could change anything your dad would be miraculously cured right now, would that not be the case. Again, I am so sorry.
For YOURSELF, and self care, it is important that this not be your life, but that it be a part of your life. It is important not to drape yourself in a mantle of guilt because guilt requires causation. You didn't cause this and can't fix it. The is about the other G-word which is GRIEF. And if this isn't worth grieving, then what in the world is?
Everyone goes through struggles. Reading this forum has made me realize that, some have it much worse than I do
Finding happiness in the little things of life helps me a lot. You can write a gratitude journal. Everything everyday that you are Greatfull for. You also can accept the fact that you can't change this, somethings just can't be fixed. Accepting that, then find your happiness inspite of diversity.
You deserve to be happy and healthy, I'm sure if your dad was of a healthy mind he would be telling you the same.
When my dad complained to me how terrible he thought the memory care hospice facility was, I listened to him complain a little while and then reminded him it was no longer safe for him to be at home and tried the above.
He thought guilt arises because we have the freedom to make choices and thus feel responsible when things don’t go our way. But we know nothing you can do will end your dad’s dementia. So while you may have chosen on a certain day that it was time to put him in a facility, you are NOT responsible for his dementia.
Loss is facing the reality that everything we cherish is impermanent, including our own lives and those of our loved ones.
I wish you and your dad peace.