I have a question that I've been trying to answer fully and honestly.
If you got dementia would you want yourself as your own caregiver?
In other words if you think of you receiving your own care what would you think?
I'd be ok with it. I'd be yelling at myself sometimes and get really frustrated but I'd know I wouldn't quit on me either (assuming both sides).
It dawned on me thinking about this just how much I wouldn't know as time goes on. Not driving, writing, using the phone are just visible things. I would have lost all kinds of references and thought processes that are the core of what I am at all. Scary stuff.
I think it's a piece my mind wants resolved. How well did I do by her? I can't think like my DW, but I know my memories of what I did and didn't do and I'm me so I can answer this question fully from both sides if I'm honest.
Would I be ok with accepting my own caregiving? What does that answer mean?
Honestly I would be ok with my own caregiving but I'm not sure I'd give it 5 stars (maybe 3.5). I would give myself 5 stars for safe lodging, good food, caring for my basic needs (toileting, bathing, clean, comfortable clothing, etc), providing good medical care and anywhere between 2-4 stars depending on the day for patience, understanding and providing enough stimulating activities. I do know no one would love him more than I do, so not sure how that would translate to caring for me.
Wolf you pose an interesting conundrum. As I have mentioned in the past here, DW & I cared for her mother thru the later stages of AD finally placing her in a NH where she passed. Upon being DXed, DW's only thought was suicide. There were no illusions she knew what the futre held, She did not want to experiencel the horrors, tortures and indignity this disease inflicts upon its victims. Nor did she want to destroy my life which she knew would be 100% devoted to her care. Could I have facilitated her acting at the time? Yes I certainly had the knowledge as to how to and access to the medications to do it. I was too selfish to let her go. Instead I secured anti depressant med. Did I make the right decision allowing her to continue prolonging an unwanted life? Would I want to be the recipient of the care I rendered... unintended consequences... yes and no... life is a series of choices, quoting you, "what does that mean?"
marty--my husband went through life thinking about his Dad's EOAD. He told me and his close friends that if he received the DX, he would commit suicide. When he was DX with MCI, I was afraid and spoke to his neuro about it. The neuro (whom I respected) said he had never heard of an AD patient who had the skills to plan and execute a suicide after DX. As we all know, the area of the brain that controls planning and organizing (executive function) is damaged early in the disease. Steve was pretty upset in the early stage, but never mentioned suicide once. It never crossed my mind to try to try to encourage him in that direction--I wanted to try to overcome the problems and give him the best life he could have for the remaining years. And yes, I'd be ok with my own caregiving Wolf. It doesn't mean much, because if I need care, there probably won't be anyone around to do it. That's a problem I'll have to tackle at a future date.
Oh Wolf, what a question. I guess like LFL I would rate my care 5 stars for basic living care (food, home, clean clothes, etc.) but sometimes I get so frustrated that I don't treat him so well. Thinking about someone caring for me the way aIare for him........well, maybe I should try a little harder to be more patient.
What a question Wolf...I'm questioning myself lots these day, as to whether I could have been more patient with DH before placing him. I go visit him now, and there's not one day there that I don't have thoughts of bringing him back home...wish I had tried harder, perhaps if i had him medicated as much as he is there, I could have kept him home and had more patience....but I was too scared to. They say he gets aggressive and they need to keep everyone there safe...I question that he could be that bad or if they just find it easier to do that. I know he would care for me to the end, that's what's's making this so hard for me.....i should have been more patient As for caring for me, I think in general, the basic care of food, security , a safe home, etc...I would rate a 5, but need to be more patient....who knows how i would be with AD...we are all different?
I would be the patient of my own caregiving—in fact I am and have been for years.
In looking back at the 24+ years I was Caregiver for my DH, through his Mental Illness and VaD, until Aortic Stenosis and CHF took him, I did everything I possibly could to provide the best environment for him; and maintain his health and wellbeing to the best extent possible. Classic to Caregivers, I think, I put caring for myself last much of that time. Luckily, I turned that around in the last few years and got pretty much caught up.
Yes, in all that time, there were bouts of impatience, anger, frustration—I’m human. Sometimes, those feelings were directed at myself. Mentally rant over something he did, then catch myself up short—“Of course he did that—it’s the VaD. Why would you expect anything else?”
I’ve done the same thing as regards my own condition---“You have advanced CMT---why would you think you could still do that?”
But the bottom line is, as long as I am able, I know my condition best and can do the best job of advocating for myself. That said, I’ve already gone through the process of arranging for an Advocate, should I be out of it—under anesthesia, become a Dementia Victim, whatever. Since there is, as yet, no chance of a clone, and my Daughter lives too far away to deal with immediate situations, I’ve chosen one of my sisters to be my patient advocate. I’ve made my wishes known clearly to her. She has also, promised to keep my Daughter informed and consulted when possible, though the decisions still reside with her. I know she’ll do the best she can, to honor my wishes. At times, she will likely do so differently than I would do. The bottom line is, I trust her to do the best she can. It will be good enough.
My God, we'll have to clone Nikki!!! I know that I take better care of Lloyd than anyone could or would. I too get impatient at times. Then my daughter Maria reminds me of how he must feel or how he may at the moment not be cognizant of the whos and wheres. I get so impatient when he fights to keep his clothes on and then Maria will say "How would you like a stranger taking your clothes off?" Can't be sure of anything anymore except here we are in this flipping mess and there is only one way out for him.
Like others, there would be no one to care for me. If the rolls were reversed my husband would have no idea how to run things - never could figure out paying bills. I would not want me for a caregiver and if ever given a fatal diagnosis I pray I have to courage to end it so no one will have to debate 'who will care for her'.
I've tried to determine if some of our conflicts or misunderstandings were because of normal marital life or if they were because of AD. Either way, I have learned to forgive myself for some of the things I did because I truly did not know what I was dealing with. But my care for him was never in doubt. I would love and care for him as long as possible, I would protect him, that was a given and I'd feel safe and secure if I were my own caregiver. I had to place him to save myself from his violence and my aging, but I was still there for him.
I would have no problem with me as my own caregiver. I have no doubt that I have done my very best for Kathryn and will continue to for as long as she needs me to no matter what the cost to me either physically or financially. Is it the best care she could have? I'm not sure. I asked Kathryn's neurologist what else I can do for her and she said that I was the most proactive caregiver she had ever known and that there was nothing else I could do that I wasn't already doing and doing well. I continue to research every day for new or better ways to care for Kathryn. She is my life.
I would be happy to have me take care of me but I do not want anybody else to have to care for me ever.
Jim, that's a happy picture of the two of you. I notice Jim Belushi looks like you.
I went at it too like that whatever the cost to me and after five years I hit a wall which I hope you will never know. By the time I put my Dianne into a nursing home she had very minimal awareness, couldn't speak anymore, and moved with a determined shuffle. I'll never accept that I did that even though it's just one piece of wreckage from accepting that she got AD at all and that I watched it take everything from her slowly and relentlessly without the ability to help her. I screamed in the house to take me instead but no one heard me except my poor neighbours.
I'm that guy on the beach now scanning with one of those metal detectors looking for pieces of his life. I don't know what fear feels like but I've learned the hard way that I can come apart. It's easily worth it for her and that is still true on the other side of taking all this shrapnel.
I'm collecting them in my garage. Some might interest you. It's that she wouldn't have wanted to live without me anymore than I want to live without her - so it's better that it's me that has to do it. It would also have been tougher on her to help me through AD and so again, it's better that it's me that has to do it.
This thread is one more of them and I thought it might help some to think about it. None of us know whether we are giving them the best care and I kept reliving only the moments I let her down in those five years. But if we ourselves would be grateful for the exact care we gave them - then that has to be as good as it gets.
If I knew my wife had done for me what I am doing overall I would be very grateful and knowing everything I did, if I got the same care from anybody that I gave I would be grateful. That is now the weapon when my mind drifts over to the mistakes I made. And if it helps anybody else inside to think about this - good.
When I am impatient with dh - and I often am, especially at 2 a.m. - I think he wouldn't be that way with me. He'd be a better caregiver. He had a way of handling stress that was learned because of the career he had. It was filled with daily stress and yet he liked what he did and just said that goes with the job. Well, stress goes with my job now and I only wish I handled it better. I've finally given in to my kids and will be having a woman come in to help me. I hope I can let her. Yes, he'd be a better caregiver.
I wasn't too bad at it. I really gave him that part of my life (leaving me in a confused state of "now what?" now.) With Jeff in an ALF, I think about that too. It's a comfortable place. I love the staff. I wouldn't mind it there, and I've had friends visit Jeff there who say (not entirely jokingly) the same thing.
Nevertheless, I wish I could know with enough advance warning--if neurodegeneration comes to get me--so that I could pull off an exit strategy. I understand that the logistics of progression make this unlikely. My kids even have said this...semi-jokingly...to me, that I should set up the plan and put reminders on the calendar, and they can bring the plan to my attention when the time is right. Like they'd do that. Who knows? They grew up watching their dad decline. Maybe they really would help.
So, yes. I'd find my own caregiving acceptable. But I don't want to eat a chunk out of anyone else's life that way.
emily, that reminds me of the main character in the book, Still Alice. I don't know if you read that, but after Alice was diagnosed with AZ she planned that she would commit suicide when she thought that her symptoms were getting really bad. She hid a stash of pills that she would take in her nightstand drawer & she put a reminder in her Blackberry phone. Well of course by the time she got bad she could no longer work her Blackberry.
It reminds me of author Terry Pratchett too. He made a film called "Choosing to Die," about people who elect to exit with the help of Dignitas, and Assisted Suicide organization in Switzerland. Pratchett has the PCA version of AD, and acknowledges, in the film, that by the time he might deem himself "ready," he could easily be beyond the point of being able to take full responsibility, which one must be able to do in order for something like Dignitas to provide the means.
In Still Alice she did find the information on the Blackberry, and read the instructions on what to do, but then walked to get the pills, and then forgot what she was doing and I think erased the message to herself.