My frustration is off the charts

This disease it such a rollercoaster— Im so happy to see that some of you are at places in it where you are able to think about and write beautiful and poetic things about the journey. — thats really really nice. I wholeheartedly applaud that thats your place today. be grateful for every second of peace— may it refresh you and reinvigorate you to face whatever tomorrow may bring. each day in our situation is a brand new scenario. A brand new level of heartbreak and chaos because our medical system has so far ‘completely’ failed us—
by shaming the caregiver ‘in front’ of the person for putting them through an unnecessary appointment— by telling the one who is cognitively impaired that there is NO reason to BE tested because we should be able to handle this at home together with good communication up until the time the person needs to go into long term care—telling us BOTH that there are NO medicines that will slow the progression—there is nothing that can be done— and that the reality is, Neurologists just simply dont want to tell you that they cant help you…so they will offer medicines which actually do nothing for the disease. Here we are, trying to get help—and he says all of that— and then directly asks the one who thinks hes fine and absolutely is NOT fine—yes, the one “without” cognition, “do YOU want to be tested? you dont need to be— but we will do it if YOU want, even tho in my opinion, its a waste of time. I'm speechless. We leave- i’m deflated- alone- nowhere to turn, no kind of hope for any help- trying to care for an impaired husband whose decisions and thinking ability are so poor now— that he can hardly be left alone.
thats what this disease
IS for us today. I really AM glad to know that maybe some peaceful days might come in the future—where we feel such gratitude and solace as you….thats a gift to be treasured for a certainty for you guys— im happy for you and sending many hugs your way .

I have a husband diagnosed 6 year ago with vascular dementia. Now I have had to get a pacemaker 2 weeks ago. Yes this is a difficult time for sure. I wish there was a place where I could bring him like an adult day care. I could get a break and some rest and I think he would benefit from other company. Unlike someone with alzheimer's who forgets the things they have left behind with vascular dementia they still retain their memory of the things they once enjoyed and cannot do, such as driving, fishing, and the camp they love to go to.

@shmerdloff

I agree with what you said about dementia being a gift (to the afflicted) when the person who has it reaches the stage where that person doesn't know he/she has it. But how does that make a caregiver "kind of heroic"? We are just doing what God willed.

George's Wife

@georgescraftjr
The heroic part is taking on the role of caregiver, plus dealing with the loss of the person you knew, plus being the continuing life for the person who may not even know what Life is anymore.
Making the choice to turn away cannot be called heroic. Turning in to the task, whether or not you believe in God, can be said to be heroic, among other things.
God is watching not only the patient, but also the direction the soon to be caregivers will take.
A friend of mine left his wife in a sanatorium, remarried, and went on his happy way - not exactly heroic.

@rebeccagrover
Sounds like it's time to get a more trauma-informed physician who is a better fit and listens to you.

@shmerdloff "Taking on the role of caretaker"? For most of us, it's not a choice, it's just what it is! I love my husband and so I take care of him. It wasn't his "choice" to get Alzheimer's. It was my "choice" to marry him 22 years ago and honor my vows of "sickness and health." Do I wish it were otherwise? Of course, but caring for someone who needs me and who I have vowed to love, honor, and cherish is not a heroic "choice". There IS no other choice if you love someone.

@theglobalnomad1
If more people had your point of view, then posts on this site would be greatly reduced. To the "outside world" it still looks like heroism. 🫂

@shmerdloff

Heroic I am not. Perhaps there are many other caregiver who are heroes.

I am one of the people who provide care to our partner out of love. When things get tense or I reach a breaking point, I hang in there out of a sense of honor and personal integrity.

Thanks for the underserved recognition.

George's Wife

Friends have commented on how patient I must be, but I feel it’s more being resigned to the situation. Kind of like when you leave school and go to work - no more sleeping in, no more partying during the week. Wake up at 6, get to work - it’s a different life.
In this case you get to make the adjustment with someone you love and care for

@georgescraftjr
"undeserved"? recognition?
Last time I looked, the kind of love that generates that kind of commitment and service is very high up on the Love ometer. I do suppose it could be lower, on a mere sense of duty, even (omg) pity, but why not go higher. and higher, and higher. Jackie Wilson
Bruce Springsteen.