Joan, you are so right. My DH often says to me, "You just don't know what it's like. I get so frustrated and I know it isn't going to get any better." I tell him that no, I don't know what it's like, but I can try to imagine, and by doing so, hopefully, I can be more patient and understanding. He also often tells me that he doesn't know how he would react if there was more stress in our daily life. I strive to keep the stress level way down. I find that helps me too, to cope with the things he can't do or the emotions he may not be able to express. I would imagine it is even worse for those who know and understand what is happening to them, like my DH.
The mind, really, is the essence of who we are, the memories and the future plans. I cannot imagine how it must be when that is all gone, but I know my spouse often tells me how scared he is. All I can do at that point is just hold him and tell him that no matter what happens, I will help him through it.
Joan, your statements say that the spouse knows that they are different and that they have lost something. Understanding their frustration makes sense then. Others with the disease really don't know what they have lost. They look in the mirror and see themselves and see no difference. That is a whole different side of the story.
My dh was in denial for a long time and even then truly didn't see the changes in himself. I think that at some point he may have known things were different but found ways to deal and ensure I picked up the slack so it was able to be hidden even longer.
If my husband was in pain, I would rather take the pain that watch him go through it. With this disease, I think I would rather be the caregiver and deal with the pain than have him do it. Life certainly does give us some interesting twists.
Okay..you all know me and know how outspoken I am. I don't hold anything back once I decide to speak my peace. (Joan never comments on my comments - I think she's too shocked!) <grin>
If I was still myself (as I am now) and found out I had AD, I would be having a deadly accident in the very near future - as soon as I made a notebook listing all insurance policies, bank accounts, deeds, credit card numbers and phone numbers to call and cancel, make my own funeral arrangements and pay for them, and have a big reunion party with my friends and family......then I might go on a cruise and accidentally fall overboard. There is NO WAY I will allow my family to go through what I have gone through for these last 3 years. The joy I have had for the last three years and the places I've gone, the fun things we've done - are not worth putting my children through this He**. And, I am too much of a control freak to allow anyone to tell ME where I can go and what I can and can't do! <grin>
I don't know if I would have the guts to go through with the suicide. The last time it came up I was 8 years old and I didn't have the guts then either. But, I'd do what my next door neighbor just did. I'd place myself.
I haven't read the whole blog. I'll go back and do it after I respond to the line that just hit me so hard.
Sid said: “You have NO IDEA what it is like. How would YOU feel if your life was taken away from you?”
We already know that our LOs are clueless. But YES you do know EXACTLY what it feels like to have your life taken away from you. That is why Caregivers die first. They end up with nothing to live for if they allow it to happen. There is no way to get the old life back, so those of us who have decided to survive this, try to go forward and find the new life that is out there.
I sure as Hell don't want to go through AD if I get it. Nor would I want my family to have deal with me. (Even though, I of course, would be one of the sweet compliant patients -LOL). I think I would probably do what Starling's neighbor did - place myself while I still had the faculties to do it.
Starling,
I agree that we DO know what it is like to have our lives taken away, and I have said that to Sid, but he does not empathize with that at all. Nor does he really have any idea how difficult it is for me. Which isn't his fault either.
I don't think it's true that we can know what it's like. We can imagine or think about how we would feel, but we don't really KNOW. I cannot possibly know what it would be like if I couldn't read and learn or if I couldn't reason. I know it would be horrible, but I don't really know how I'd feel!
I've thought about Mary's solution and my husband has actually threatened it, but I don't think either of us would follow through. I hope he won't. I'm working hard to get the one gun he has out of the house. It's a very old pistol that belonged to his father. It might be valuable, so he is resisting giving it away or taking it to the police station. He wants to sell it. I'm going to dispose of the ammo.
Just a little p.s. - I'm afraid if I put myself in a nursing home, my children (who state that no parent of theirs will ever be in a nursing home) would check me out and insist on taking care of me! I don't want that to happen. NO WAY. But if I have AD, I couldn't stop them!
i may would consider moving to a state that offered assisted end of life options.. but i would first get my final estate in place-and go for a round the world 100day cruise as a last tribute to living.!
we have been lucky in the sense DH never knew he was ill. he thought it was work burnout and we left it at that even after all the memory issues surfaced. he has never know he has AD. that i am so very grateful for- divvi
My DH knows he has AZ and he also knows his short term memory is BAD but he keeps saying it's because he doesn't pay attention. He has used that excuse for years and for a long time I believed it but now think it was the start of AZ. So that excuse doesn't wash anymore.
Taking care of my husband is hard at times, I'd be lieing to say anything else. But it is not his fault that this has happened to him. Yes my life is different than it might have been otherwise, but I don't begrudge taking care of him. I even think maybe I have become a stronger person by having to go through this. Yes, there are times I want to pull my hair out and when I have really felt sorry for myself. But I'm not ready to turn my back on him. I'll take care of him as long as I can and I am not going to look back at what might have been. That is what you do when you love someone. Our vowes were for better or worse, for sickness or in health, till death do us part.
Mary, I agree with you. And this doesn't mean I'm in a state of depression more than anyone else here! Putting myself in a nursing home would mean that there would be no chance that my daughter or sons would get ANYthing from our estate, and I'm working hard to prevent that from happening. Yes, it's letting money rule the decision, but that's reality.
Starling, you are right that we know what it is to have our lives taken away from us, but I truly think we cannot fully understand what it is to have our minds taken away from us, knowing it is happening.
Mary, I'm with you. Were I to be told I have AD, I would put everything in a state of readiness, leave all instructions, and depart on my own terms. The trick is to do it early enough that you can, in fact, do it. Placing myself in a facility wouldn't work for me, as this in no way spares one from the indignities of advancing AD. I'd much rather get on the bus a little too early than to miss it entirely. I say this with a cheerful heart. I just know what kind of future I would never ever want for myself.
Joan your Blog was very well written....My DH. has known for a long time that something was happening to his brain...About 3 years ago, when we were still in Clearwater, I came home from shopping to find him sitting on the couch, with The Rifle in front of him and the ammo, lined up...I thought I had found all the Ammo in the house, but he had some hidden. He didn't have the nerve to do anything, Thank God...I did get rid of all his guns( he was a hunter) Now he tells me if he had a gun he would shoot himself, "that this is no way to live" It is a very Sad Disease, we all know that. It is not easy for any of us, to watch them go slowly downhill.. Like someone said, we are in this for better or worse, sickness or in health. I pray for my health to continue and patience to take care of him.
Mary, but the place that my neighbor (also a Mary) put herself into looks and feels like an apartment. She has a little apartment with 3 rooms and a tiny kitchenette. She doesn't need more than that because there are 3 meals included in the dining rooms and snack bar that is open 24 hours with healthy snacks. There is no reason for her children to "check her out". She is in an ALS, not a nursing home. At this point she is still quite independent, but as she progresses they will take over more and more functions for her. She really did land in a safe place.
If anyone misunderstood me, and thinks I have a death wish, I apologize. I am not depressed at all. I don't mind taking care of my husband! I loved him and I love the two year old! I'm saying that if I am diagnosed, I want to get everything in order and take that world cruise with Divvi, then, the day before docking, accidentally go overboard....so that my children won't have me as a burden. If I was in an ALS, at least one of the kids would insist on living with me (I've only had 4 months since my oldest was born that ONE child didn't live with us (46 years), and they will keep that up, I have no doubt!) and if it wasn't allowed, they would move me out. We've always been exceptionally close and there for each other and travel together as well.
I've seen where Marsh lives (on the internet) and wouldn't mind living there AT ALL! It is great! And Marsh, hopefully I would do it before I forgot it! <grin>
Starling, your friend is very fortunate indeed. It is a great plan.
After seeing what this disease does to caregivers, I don't want my children and grandchildren to have to take care of me. Hopefully, however, I won't get AD! I'm an optimist and love life and try to enjoy each day...and bring joy to my husband each day.
I know for certain that as time progressed, my dh knew what was happening. Sometimes, he would just stop and tears would come streaming down his eyes. We all feel so help less when this happens. Dh had a sister who died from breast cancer. She fought for 7 years but when it hit her brain and she developed double vision, she knew her time was growing shorter. She was a magnificent woman. Never complained no matter what happened in her life. Divorce, miscarriage leg perthy disease as a teenager. She took all the lemons and made lemonade. When hospice came to the house, I saw an anger in her that I had never seen in all the years I knew her. Lord knows, she had the right to be mad. I saw her lash out at her 2 daughters-something she would never had done. My dh was heartbroken (we think they were "attached at the hip"-they were that close). My dh never complained once about having this disease. Never once said why me. I don't know how I would react if we traded places . Even today as he sits in the nh, he did not react to me but as I sat talking to him, tears streamed out of his closed eyes!!! I think we are much stronger than we give ourselves credit for. I believe my dh is the most courageous person I know. I don't know how much courage I would have.
One thing we can say about our trading places with our loved ones is that we would all get excellent care as that is what we are giving them........ okay, maybe not but I would sure hope so.
Just today Jim was trying to explain to his visiting (mental health) nurse that he feel like he is on a mission that he knows will result in his death. He said it seems surreal. He knows from looking at the FTD website that he is in stage 4, heading into 5, and that stage 6 will be the end. It just seems so surreal. He just worries that he will become a burden to me or that he will become aggressive as some that he has read about have. We tried to reassure him that he is on meds for aggression (Seroquel) and he is doing well. He has made me promise that as soon as he becomes a danger to either of us in any way that I will place him. He knows that I will be there daily till the end, just as he would be for me. Ok, I'm crying. Good nite.
Susan I am so sorry that this is so hard for both of you. As bad as it was for me at least my husband never had a clue where all this was headed. The psychiatrist was amazed at this-even early on Bill either didn't know or wouldn't admit to his problem. This is something I will never know.
Susan, hard to believe your dh has so much insight and understanding about his disease. My dh has never mentioned being too much work for me to handle. He talks about having a disease rarely and prefers to not discuss it. You are fortunate that he has the understanding he does. Hang in there, we are on the rope with you and mammy jammy and the others.
There come days that no matter what, we just have to cry. Cry Susan. It is good for you. Tomorrow will be a new day and maybe you will remember all of us here thinking of you and supporting you in any way we can. We are your life boat. As TexasJoe said "Hang on Susan, it may be a bumpy ride"....
My husband has FTD and he has no insight into his disease. He just believes he has a bad memory and that his brain is shrinking. No idea of progression or anything. I'm glad he doesn't understand as I would be worried about him taking his life as he had always said that he wanted to die if he got any type of dementia.