I am not able to shut my mind off in order to get some sleep. I take sleeping pills(perscribed) and anti-depressants during the day but I can't quit wishing that my life wasn't like this. The nights are so hard to deal with. My DH has no idea what I am going through and it doesn't even do any good to try to tell him because he "acts" like he doesn't care. I don't know how true that is or isn't but I can't help but feel that way even though it probably isn't true. I am not sure that I am expressing myself right. I want to scream at the top of my lungs..."I WANT A NORMAL LIFE!!! How long am I going to be in limbo? Don't answer that, I know that there is no answer. I don't feel the same way towards my DH like I use to. He is a child like man and I don't want a child like man, I want a real man.
It is 2:32 in the morning and sleeping is the furthest thing from my mind but I have to make myself do it or I won't be able to take care of my dh and who knows what the day is going to be like. From the time I put my foot on the floor any thing goes. It's almost like if I go to bed all I have to look forward to is getting up and nothing is going to be different. I am still going to be lonely with him right here in the house with me. No one to talk to and no one to laugh with and no one to have a healthy relationship with. It goes on and on and on and on like this for who knows how long. I need my anti-depressant dosage increased I guess. haha!(that would be a sarcastic haha) Vent over for today!!!
deb42657,, Try to wean yourself from those pills.. They are not the answer.. I'd hate it if you were dependent and when your future does look brighter, that you'd have only the pills. I feel so much for you.. I am there too...I cannot advise but only to say that we have to become immune to the depression that this disease brings.I know that somewhere in the development of DH dementia, I have insulated myself,,,I have learned to be less guilty at doing little things for myself....Get use to the fact that in your LO's eyes, you will never be doing enough for them and get use to being called selfish...My dear, look out for yourself... Start walking, reading, getting away from there for a little while, with only thoughts of what new thing you can do to please yourself....Know that you will NOT be a caregiver forever... Look forward to something special.. You are doing a fantastic job,,, keep telling yourself that, smile when you see a butterfly , a puppy or a baby..... We as caregivers are an abused lot... Remind yourself that you are a vital person doing a job no one else wants and doing it dam well... For the most part, our marriages are no more..We miss that strong influence of a husband and helpmate... We know we cannot get this one back... Deb, you are an important person.... Make yourself primary for a change.. Would it help you to know that it's ok to pay attention to your needs TOO..? Let us know, dear, often, how you're doing.... All the best.... peggy
Deb, I stopped the sleeping pills and replaced them with a zanax about an hour before I go to bed. I was having trouble turning my mind off of the problems and this seems to help. I know the feeling of being stuck in traffic.
Stuck in traffic, I like that :) Deb my heart goes out to you! I was overwhelmed when Lynn was home with me but my real depression didn't start until I had to place him. I am still fighting it. There is nothing wrong with taking prescribed pills; you need to do whatever you can to help you through. Have you had your Serotonin levels checked? I had to be on medication for a while, but now I am off them and doing a more natural approach. Thing is you have to be able to get healthy enough, to even care about yourself to try the more natural ways. For me, that meant taking medications until my levels were semi normal.
It has been over two years since I placed Lynn and yet I still can't sleep. Just last night I was up all night. Thankfully that doesn't happen every night, but most nights as hard as I try I can not get to sleep before 2 to 3 am. Is crazy as I am tired! Lynn always had strong empathy and even in stage 7 he still does. It must be so hard for you not having that... and I am sorry you have to deal with it. ((big hugs))
deb426567--I don't have much experience with anti depressants or sleeping problems (thankfully), but I recognize the emotions you expressed in your post about wanting out, wanting a normal life. My "diagnosis" is that you aren't getting enough respite and that is probably causing your depression and difficulty sleeping. The only way I was able to calm down and handle this role was to enroll my husband in daycare and get time away. I knew that I wouldn't make it unless I found a solution to give me space to breathe; it doesn't have to be daycare, but you must find a way to get help. Nikki used the word overwhelmed, and that is a good way to put it.
I sympathize with you but I think most of us have to take anti-depressants just to stay sane. I know I have to in order to stay calm and not have anxiety attacks. There is nothing wrong with that unless you abuse them. As far as not sleeping, I don't take any prescribed sleeping pills just over the counter if I really need it. Most of the time I am so exhausted I just pass out right away. There are plenty of time my hb keeps me up with his getting up and talking to himself. We all do what we have to do just to make it for the day. Take care of yourself however you can. Good luck and take care.
Acceptance in life takes a thousand steps. Acceptance in a changing situation is impossible. But acceptance is our largest weapon. It is the USS Nimitz of AD. It does take a thousand steps though.
The fact that we still want our normal life is a signal to the vets about where we are on that journey. It would never occur to me anymore to want my normal life and I feel nothing now saying this. I've done that painful journey and accept that it is long gone even as the shell of her is busy at this second pulling the sheets from my bed now that I'm up and the door is open.
I sleep like a baby. I shut the door and any noise is not my problem because I'm staying at a resort and others are up doing stuff; but, I'm rolling over and going back to sleep. The day I accepted this is the day I stopped being a zombie and sleep as long as I like. I have slept until noon. This won't work with many men even though no one agrees with me that men and women in AD are entirely different with some exceptions.
If my wife was a man and I was a woman and she became belligerent I would drug her into next week, put fresh depends on her and sleep anyways. That's cruel. No. The alternative is to put her into a home and there her life is what every person who has spent considerable time in nursing homes knows. It's fine. It's necessary. She's better off here with me right now. If her behaviour becomes a problem I will medicate her to the point where I can control the situation. If I don't have some control, I am a prisoner run by the inmates. How that is a functioning proposition escapes me. Martyrdom is not the test here.
The early part of AD is shocking. The middle part is traumatic because the realities of the extent of the devastation to both of us assualts us much harder than likely any other experience in life. The late part has to evolve into us being hardened to our tasks and effective as nurses.
That is what we are becoming. Nurses of the situation. I am not my wife's husband in any sense except the legal one. I am her nurse.
Leaving them when we find out is not poor behaviour anymore than staying and helping them through it is good character. Yes it is. It IS good character. That's you. The person in the room with unquestionably good character. That's you. Reading this right now. That's right I'm pointing at you.
Confusing nursing with martyrdom I notice is a common thing. That's easy to analyze. Our lives have been devasted by the very events that now demand our sacrifice. There is not time to grieve or have feelings for ourselves much because the whip is out and whatever you're learning to deal with here's something fresh and horrific for you. The horrors keep coming and as we narrow into a machine that barely succeeds in keeping up with the demands - they suddenly stop and now the silence magnifies that for years we have increasingly become disassociated from ourselves and all normal life - and now the damage and the pain have time to come out because the bombs have finally stopped.
Yup, it's a great little story of both tragedy and near sainthood except that this awful thing really has happened to you. Accepting that takes a thousand steps. Anyone finding peace on the other side will have earned it.
It get's easier to accept Deb. It's just doesn't get better. I was where you are. It was very hard mentally. Now it's much more sad and exhausting and frankly depressing for me; but, also much clearer in what it is. I studied AD like a banshee as soon as we were diagnosed. Experiencing it has shown me that did not prepare me. The changes required inside ourselves are fundamental and huge.
If I were to write an AD manual here would be the first line:
Your spouse has AD? Throw your life out the window and reinvent yourself or AD will do it for you.
Wolf, I wish you had written that manual. I would have a copy and it would be a ragged copy from much reading. I've copied your post. You sure did a great job in your description of life with AD. Thank you.
Mr. Wolf sir that was the most amazing amazing entry. I have moved past the first page of the discussion board and started reading other/older posts and this morning found this one. You hit the nail on the head. I really can't tell you how much it has moved, especially after a difficult day yesterday. Thank you, thank you, thank you
Quickly - note the star by my name. After my husband died June 2 and I spent July on our little Maine island, I realized I no longer needed the zoloft my doctor had sympathetically prescribed when all was difficult with my husband. I'm now down to half dose daily, will be on half dose every other day soon, and have had no difficulties. Going off when you're out of the stressful time can be as simple as going on. Don't hesitate to get it when you need it.
Right on Wolf! I doubt that there are more than a handful of caregivers who have come through this unscathed. Maybe not even that many. This dx will take 2 lives if we let it. If you are feeling depressed, by all means, get to your Dr. and get whatever you need to function. They aren't going to make an addict out of you. Like briegull* said, you CAN get off of them but you do it in steps. I take Celexa and Trazadone. I had not slept in almost 3 months except for 15 minute little zonk out times. I had tunnel vision from lack of sleep. He gave me 150mg Trazadone and said to take what I needed. (It can be cut into different strengths). Sometimes I take 25mg but other times I take the full 150mg because things are more stressful. DH takes 150mg everynight and it only works if he also takes a Celexa with it. I feel for you deb42657. Lack of sleep can be brutal. (((hugs)))
Phranque, it's my toilet and I'll kick it when I want to. Thank you Dion or Paul and Paula or whoever that was.
My close friend who still calls almost every day was here last week playing cards. He sees my wife is better. I am now closing in on 4 months without any meds. I stand by what I wrote; but, that is understanding what this is. Daily life is much different in the same way that poop down the toilet and poop all over the bathroom are different. They're both poop, yes; but, they are very different.
I woke up this morning realizing I have to deal with the toilet I broke. I went on it anyways and turned the valve on to fill it and then shut it off and flushed as I do with my wife. Only this time the valve started dripping even though it was shut. Everything that goes wrong is now an onslaught to my sanity.
I went downstairs walking around all the things my wife has pulled out. A cushion on the stairs. A bedsheet in the living room. A cup on the floor. Much more. I fed the cats and put on coffee and washed the dishes. I leave the pots and pans generally for the morning because I'm tired of all this by the evening. I took my single favourite pot which is a pyrex clear pot we got at our wedding shower and it slipped out of my hands and cracked in the sink. I wailed like a child. "I don't want to live anymore! I don't want to live anymore!" I sobbed while my wife stood behind me eating balls of kleenex.
The daily life is different. It is gritty and viseral and whether we keep all that inside or let it out, I'm not going to bother asking whether most have these moments. They do. Because we're human beings and the things happening to us are real. I'm not ashamed of behaving like that. Or worried by it.
The reason is that I believe better survival tactics are to force a conscious realization that we now live by.
I'll explain. Every person wakes up once in a while and reminds themselves of why they get up and go to work. We need that sometimes to keep perspective of the larger thing in our life.
That's key here. I can't afford to be in the moment riding the flotsom. I have to deal with the fact of the tsunami.
AD is (or was) here and if it hasn't already, it is going to have it's way. Nothing can stop this.
Early in the first third this doesn't apply so much. Little can be done to reduce the shocks. Or at least I can't think of what. I can tell you I did a lot of reading and it didn't help Wolf the human being much.
By the middle third the hurt of seeing the changes in the personality moves to basic skills and the raw visual and physical affronts that entails. The disease literally migrates from the psychic to the physical world as it progresses through nuance, complex function, normal personality, and into talking, walking, and eating.
It's much worse on us to go through this middle stage where we've already been traumatized by what has happened so far, if we haven't built up some forms of support systems. I don't mean other people. I mean us. Our internal support systems.
I have come to terms with Alzheimer's. The test is that nothing about it has the power to create a reaction inside me. I get it. She's going to lose walking. She's going to bedridden. And then she's going to die. If any of that shocks us, then we're not there.
Many think of acceptance as the end state. The seven steps to acceptance and so forth. That is a misuse of concept. Or at the very least a failure to complete. There are three stages to a complete cycle - not two. The first is realization that the thing exists. The second is acceptance that it does. The third is coming to terms - assimilation.
My sister accepts that my mother died four years ago. She has never come to terms with the boxes of her belongings in the basement and has not assimilated our mother's passing into her life. I have her ashes in an urn right here with me and if spirits exist she is welcome. She had her life. I have them because my sister wants to scatter them somewhere but can't face that. So I gently touch on it once in a while and in the meantime her earthly remains are safe here with me. Assimilation.
My wife is dying slowly of an incurable disease which is tearing my life apart. I will try to do what I can and this is so serious I'm going to need to hold on to my life with both hands. This does terrible damage to both of us and is going to kill my spouse so no level of seriousness is too much. It's going to wear me down and afterwards I will have to try to pick up the pieces and live alone. That's what needs to be realized.
Acceptance
We never go anywhere. We don't because almost everything is impractical. I could take her for drives in the country and she likes that. But it's painful for me. And I don't go out myself because I'm not ready to do things alone. That's acceptance. I know what it is and I know why. I haven't done anything though.
Assimilation
I go about my life. I think in terms of me. I'm not feeling that happy but my thoughts are about what I will do without being forged together with what I have lost. They are seperate things. I do the thing without watching me do the thing. I can enjoy the moment, feel sorry, and not change the moment by remembering. We all live together now because I have assimilated.
One day my sister may too. And she may not. It's so much better to be comfortable that mom had her life and I wish she could have gone on forever, but it's not like that. She doesn't know it and I won't tell her yet but my sister is protecting her pain. She is not willing to live fully in a world where mom is not here. That is the word we're looking for. Willing.
The spirit is willing but the flesh is weak. We can assimilate that as a warm up. So try and open your heart. For yourself I mean. We don't you know. We say we do. It's a big blind spot though like in a car. That blind spot is real. Try assimilating that too. Nobody treats others the way they treat themselves. Why not?
I don't need a voice inside that tells me I need to help myself. I need a voice inside that's looking for ways. In the meantime at least I accept that I need that. I just haven't arrived.
I don't need my wife to pass to try and do that. And I am trying. It's hard. Ideally we would not only accept that they have or had AD, but assimilate that fully into our lives in time for afternoon tea. Uh uh girlfriend. It's not like that.
Wolf, you are a good man and I mean that from the bottom of my heart. You can put into words what we are all feeling. I need to work on the assimulation and I will after I finely accept. I find that knowing and accepting is not the same. Love you...