My close companion, Depression, is attempting to swallow me whole again. I am an educated, smart woman that is savvy in this monsters ways.
Maybe it would be good if I can start this topic and we can all post one or two reasons we have to keep going in the face of all this destruction and pain dementia brings our lives.
My reasons are lost to me today...can I use your reasons until I get this monster under control again?
Because no matter how it seems, nothing lasts forever; eventually this Alzheimer journey WILL end, and we will have opportunities to take the wisdom and knowledge we gained from it and start a new life.
Susan L* is a perfect example, and I hope she will come along to give you her words of wisdom, based upon her experiences.
And no matter how educated or smart we are ( I consider myself to be a bit of both), we often do need medications to help us through. Sometimes if we are on meds, and they are not doing their job, they need to be changed. I know I could not cope without mine.
joang is correct. This does not last forever, it just seems like it sometimes . . . no matter how much we think we understand. Medication is a good thing for depression. Gone are the days when admitting to trouble coping and needing medication to help us was frowned on or otherwise seen as weakness. Also, when the time comes when you feel like you just can't do the caring any longer......it's alright to step away and let someone else. You'll know you've done all you could do. And, just as you are unique unto yourself, everyone has their own level of endurance, don't forget that.
"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.'" Mary Anne Radmacher
Oh my, Joan is right, I have been to the depths and back again. Please read my old post from when I let depression consume me and tried to take my own life. It was a very dark time. I did not want to live without my Jim. I survived, it was a miracle. I now know that there is a purpose to our lives, people who love us and share our pain and will reach back if we reach out. Stay strong. YOU ARE NOT ALONE!!
CommentAuthorSusan L* CommentTimeOct 23rd 2009 edit OK, we can Dance! Remember my Motto, BETTER LIVING THROUGH PHARMACOLOGY. Now the truth, my recent hospitalization was not due to a car accident, although I did crash into the lake, but in truth it was a suicide attempt. I fell into a black hole, and could not ask for help. I had been crying out for help for weeks, and finally I just felt nothing. I was calm, organized and puposefull. I wrote a letter to those I loved, took as many pills as I could find, (way too many) washed them down with a huge glass of wine and drove to the lake. I waited for dark, and for the pills to kick in. When I thought I would drift off, I lined the car up with the boat ramp, put down the windows so that the car would sink quickly and gunned it. I was so calm. After the initial crash, It was soooo quiet, and I was calm as the car filled with water, then the water began to RUSH in and it scared me. I swam out of the window because I was afraid of the rush of the water, not because I wanted to live, it was surreal. I surfaced and realized that I would probably live and was pissed. I began the long swim to shore. Once on shore, I collapsed on the pavement and cried out, what a failure I was. Shit, I couldn't even kill myself right. I'd even failed at slitting my wrists. I tried to flag down some cars, but no one stopped. I sat and cried. Finally a young girl pulled in. She asked if I was hurt and I said yes. She said her name was Jenn. I told her what I'd done, she hugged my wet cold body to hers and said she'd help me, that she understood, her sister Becky had committed suicide. Soon help came from all directions. I ended up in the ER for many, many hours I'm told. Eventually I heard my beautiful son's voice whispering in my ear, "Mom, I need you, Mom, I need you." He had driven 2 1/2 hrs in the middle of the night to get to me. I was transferred far away to northern Maine to an amazing facility that I did not know even existed. They gave me all the love, support, attention, space, tools and so much more. I left feeling confident that with help, I could see Jim through this awful disease and not have to go ahead of him to wait at Heaven's gate. It was ok, for him to go first and wait for me, when my time was right. For now, I'm alive and with the help of all who love me and Our Lord and my Dad, who watches over me, I will survive. It feels so right to share my story with all of you. I wasn't ready before, only Frank knew the truth. He was there for me each evening with a phone call that made me laugh. He kept me informed of all the alz news and that connection was so very theraputic. I'm not telling you all this for sympathy, but hopefully to prevent anyone else from going as deep into the black hole as I did. There is hope, there are ways to get out, don't ever give up. I put my windows down to hasten my demise, but it turned out to be the way I was saved. Who knew? I love you all with all my heart. Thank you for always being here for me. I promise to always be here for you. Arms around, Susan
This may not be the answer that you are looking for, but the one thing that keeps me doing this—and able to do this--is getting away from it sometimes. It doesn't matter if it's just a little while, to listen to music or read a library book, or three weeks of respite. I would have thrown in the towel already if I hadn't started getting away for a while on a very regular basis. It helps that now DH stays with an aide sometimes, so I am able to get in the car and blast music and go where I want or need to go, without having to consider what he needs every single minute. That sounds selfish, but it's gotten to the place where it's survival for me. When I come back to my role as caregiver, I'm more patient and loving, and don't feel nearly as overwhelmed and desperate. I do want to be doing this, for the man I love who I've been married to for two-thirds of my life, but I also want to live through the experience, as opposed to having it kill me. When DH was in respite recently, I spent a couple of days in my empty house with a suicide hotline phone number in my hand. I feel like desperate times call for desperate measures. I can no longer devote all my time and energy to DH, with a lot of that time and energy coming at the expense of my own health and mental well-being. I have to (finally) start focusing on me, or I won't be able to continue to take care of my husband, because this disease will kill me before it takes him.
Having said all that, not every day is that dire. But I know it can get that way, and my mission now is to keep from ever getting to that point again. And if my husband could, he would absolutely tell me to take care of myself when I need to. The love in the marriage went both ways.
Susan, I am crying from your article. I love my DH so much and right now I have been thinking how hard it will be for me to go on. Definitely medication does help me not to feel so sad and hopeless. He is slowing showing more signs of not being able to take care of himself. I wish this would STOP NOW!!! I don't want him to have this AZ!!! I will start back to work in 2 weeks and I want to be here with him for as long as I can. I have to go back but we did have a wonderful summer together! One day at a time...
Having fought off a bout of Clinical Depression during my 3rd year of Caregiving, I learned some techniques to help keep a relapse away. Most of them have to do with taking care of myself. I'm not always great at it but get your medical status current. Treat yourself to little things, even if your LO doesn't want those treats. These can be a special tea, coffee, veggie. Out to a certain restaurant for lunch. A paperback, a haircut and style. Watch YOUR TV program. Get enough rest, even if it means a nap and something else is delayed. Get help in. There are things you have to do like making Dr. appts and taking LO to them, but your time is too precious to be spent doing dishes and mopping floors. This will also get your LO used to someone else doing things around him, with him, and for him, reducing demands on you. Another thing I learned is to de-fuse. Example: We have good towels for baths, shampoos,etc. and we have so-so towels for hand washing, light wipe ups, and then we have floor towels for cleaning up the floors, the big spills, missed toilet clean up, sick animal clean up. DH doesn't keep them straight. If there's a spill, he grabs a towel--any towel. (They are stacked separately and don't look alike.) Rather than have on going battles over this, I have my towels in my room, his bath/shower towels are Blue or Brown. Any others are fair game as floor towels. If by chance he or a helper grab a wrong one--as long as it isn't mine --It's No Big Deal. We have plenty. As long as he has clean towels for his showers, we're fine. It matters to me, so I have my own. Situation solved. Many times, with a little calm thinking we can de-fuse the tension which can drive our emotional lows. Question why the matter is important to us, and then look for a way to make it easier to deal with. Big deals are TIAs, Med. adjustments, elopement, falls. There's a lot that happens along the way that just isn't that big a deal. Let those things go.
One of my problems is what he worries most about - I won't be around to take care of him. I have this cynical side to me that it would serve him right for me to die early and he be left alone to worry about who would take care of him. My thinking is would serve him right for all the hell he has put me through the last 39 years. Then I think I have to survive to see if there is a happy life out there somewhere for me. Catch 22
I surived the end of the battle. But, I find myself lately, still face down in the arena in some sort of pit. I can feel the hands and ropes reaching in to help me out. But, as 'well' as I sound, it is me who needs to take hold of the help and use it. Some days I just feel too damaged to try. Late. This is the first time tonight, I feel very very much alone in the quiet. Should be sound asleep...lots to do in the barn with the horses and transporting them (should rest). My life seems so empty and pointless most of the time. Still in such limbo I can't move in any direction. This is the first time in my life I've ever lived alone.
Seems stupid, but I don't want to be alone for the rest of my life, nor I want to make another mistake. I can't survive another tragic partnership (if this last pairing was indeed a 'partnership'). I already feel ruined emotionally. Numb, almost indifferent. This is a small town...where would I EVER meet someone appopriate who would care. Lonely. "I'll get through this" keeps echoing in my ears. I'll try again tomorrow with a plan for my day beginning early. Good night.
This is a great thread...kind of depressing, but it focuses on us the care givers or those whose life has been turned upside down by this terrible illness. My dh last night went on a total melt down. The previous 3 weeks was the best he had had in months. Then out of the blue he went on a rampage and I had to threaten to call the police. He was going to leave the house and who knows where he was going. It all started because he kept telling me he wanted to go someplace. He wanted to take a trip...he didn't care where but he wanted to do it now. I told him we had a major cruise paid for that would happen in OCT. I also told him I was so tired that I just couldn't plan something this next week. I had just spent days gathering all our financial information for the elder attorney. Also, he has had at least 2 doctor appts or dental appoints a week for the past 3 months. I am jus worned out. This morning he has not eaten anything and is just sitting out on the patio with head down and says he is so depressed. I don't know what to do or do I know how much longer I can take this. I am really on my pity pot this morning.
With this outburst last night and his seemingly admitted depression maybe a call to the doctor is in order..could it be meds? Also, I hear you about collecting data for the elder care attorney. I go tomorrow for an appointment that will be a long one I think. The lawyer has been working on our trust, which turned out to have some problems as well as POA and DPOA and lord knows what else and I am as nervous as a cat on a hot tin roof about it all. You also sound like you need a break..at least for a day. Have you tried calling someone who can sit with DH while you just get out of the house for the afternoon? Like Wolf said on another thread sometimes we need to pickup the phone ourselves and holler out HELP! ARMS AROUND YOU TODAY.
There IS LIFE AFTER Dementia.....I'm living proof. It has been 5 1/2 months since my sweet Jim became an Angel, a bright star in the sky, a butterfly in my garden. I am beginning to see a light at the end of the tunnel. Just hoping it isn't an oncoming train! Grief, before and after death is very hard work. You must take time to care for yourself or you will not survive in very good shape. I'm working on getting back on track, not the train track :o) and it is work, but it feels good. I still cry, but I'm remembering more of the good times and less of the pain. God Bless, Arms around you all, Susan*
Thanks everyone for your support and kind words. About 1:00 this afternoon...my dh asked me if I would fix him a sandwich so he could take his morning medications which earlier he had said he wasn't taking anymore medications. We talk some about how terrible he was the last night and I COULDN'T BELIEVE IT...BUT I SHOULD BELIEVE IT.... he didn't remember a thing about last night and he was wondering what was wrong with me being upset with him. This is like someone playing mine games with you.
I have so much to learn...hope I have the strength for it all. He can be so sweet and then so hateful. I forgot that the doctor had prescribed medication if and when he would get out of control....I should have given him one of those pills. Since he doesn't remember anything from last night I now have to be nice and forgiving....he can't control himself.
Susan, thank you so much for sharing your beautiful article. It made me cry. I want you to know how much I admire you. Your courage is beyond description; you're an inspiration to me. Depression can overtake you and cloud your reasoning and make you feel like 'going on' is fruitless. I think we've all been there. But you have survived and lived to reach out to all of us. I feel blessed to have met you on this website. By the way, I love your son ... he sounds just like mine, who would also drive 2-1/2 hours to be at my side, too.
Keep going and growing ... you're a special person and you have a lot to give. I will remember your words and I know they will help me as I proceed on this sad journey through the desert of dementia.
When my husband and I were discussing retirement one time, he said that you have to plan your retirement or at least have a plan of what you want to do. He had noticed that those that don't have a plan tend to die very shortly after they retire. He did have a plan and even though his time in retirement was short, he did live his life to the fullest while he still could.
Sheltifan - you asked about the reasons to keep going. I have several, one of which is that I am too stubborn to let this horrible disease take me too. I plan things that I want to do in my after and dreaming about them helps get me through the day. There are many reasons why I keep going and ensuring that he has good care. It comes down to the fact that I love him, he is one of the best things that have happened to me in my life. To remain reasonably healthy through this disease you need to take care of you and do something for yourself on a regular basis. There are lots of comments on this board about how important that is and many great ideas on how to ensure that you get the "you" time.
There is nothing easy about taking care of someone with this disease and there is nothing easy about watching them go a piece at a time. So far, I have been able to get through this without chemicals - I am holding that out as a future option if I ever need it. I keep walking and spending time with my animals and with their unconditional love, I think I can make it through another day.
therrja---you've spoken well. "There is nothing easy about taking care of someone with this disease and there is nothing easy about watching them go a piece at a time." But we can help them get though it with dignity and love, and when they have gone we can then move on with our Future--our After. That Future may not shape up the way we used to think it would, but it is ours to shape--to fill with goals and dreams. Even with the limitations and problems I'll face I don't plan on missing out on anything important to me. My wishes and dreams will be delayed, and some may change greatly between now and then, but I plan on realizing them. Until then I make sure I work to keep my strength (emotional and mental) as healthy as I can, by taking respite time when I can and using the small increments of me time i can glean through the day to truly do things for me. DH's Dementia is not taking me too.