I have been crying most of the day. The other half of the day I have been angry. At me, at my DH, at dementia, at who knows what else. This is the first time that I have felt this bad and I don't even know for sure why. My DH saw some of it and I tried to explain to him how I feel but I don't think that I got it across to him. He just said he couldn't understand. I hate the way this feels. It is like I am mourning my DH's death before it happens, does that make any sense? I know that I am just suppose to take things a day at a time but it is not working. Now I am just numb. I don't know if I can do this! What is this! I need a break, I need someone to take care of me but the only one available is me. I am asking for you somehow build me up cyber style. I hate the way I feel. I know that I will get over it until next time but why does it have to be that way and how many more times can I pick my self up and start all over again without breaking the rope that I am hanging on to?
Deb, it's OK to be angry and to grieve, but you've shown many times that you can pick yourself up, dust yourself off, and start all over again! Look for small pleasures and joys, you can find them. Hope you can find acceptance, it brings peace.
I think we all fear the rope breaking sometimes. I hope you can take a break, a real one. I have my mini-breaks and wonder how long it will be before I need a few whole days.
Yes. We mourn the death long, long before it happens. Because it is happening. Parts of our spouses are dying before our eyes. And you don't get to start the phase of grief that eventually leads to healing, such as an actual widow/widower does, because you have to keep taking care of what's left of your spouse.
As for how one develops the coping skills... I guess my approach (acquired over the course of 6 years now...it wasn't easy,) is a 3-step process:
1. Become an emotional stoic. I may have started out better equipped for this than some, and it's not necessarily an attractive feature, but for me this means simply not visiting the emotional planes where the pain lives. Any more than I must.
2. Find something to do and care about that is meaningful to you, and that you would want to do whether or not you had a spouse. For me, this is writing and book creation. I also blog. If creativity is not working at the moment, and I need to block pain, I do crossword puzzles or watch a movie or play solitaire Scrabble or something. It's sort of like bullet-biting.
3. Ask to try a pharmaceutical anti-depressant if you're really down, and feel stuck there. As mentioned elsewhere, I use St. John's Wort which is a non-prescription herb, but it helps me. If it didn't, I'd want to try a prescribed med.
Doesn't make life "normal," but it can make it not bad.
you have a very good way of coping EMily I th ink. YOu are correct in not visiting those very painful places in your soul that cause us to be so desolate. I have found that after t he journey is over for y o u and your dear one you will then grieve in a different way for the memories of him/her as th ey were whole. THe grieving is bittersweet because you have good, precious memories also to relive/ I for awhile had to have anti depressant medication until I found I was no longer depressed but sad which to me is different. I also found relief for my emotions by writing essays and poetry. For others it may be crafts etc.
Deb, you will have times of despair . I found that this despairwas made worse by my being physically exhausted, and lonely. Try to get away at these times if only to go to the mall, movie or restaurant. YOu might want to begin thinking of s ome sort of day care for your spouse if you can. YOu have to think of yourself as you will need to have respite s omehow.
YOu will get through this , If I can help further I am happy to do so.
Deb, the best thing the comments here do for me is to validate the feelings I have that make me feel guilty or ashamed and help me see that they are normal for what we are all going through. For example, on bad days I look and my DH and think, "I don't really like you any more" and then feel so guilty. Reading the posts here made me understand the we all feel that way at times. And we are all definitely grieving , but not in a normal way, because we cannot move toward closure. I think the suggestions about meds are good. I have never taken any before but when I found myself crying and depressed for days on end, I gave in and felt better able to cope almost immediately. Talk to your Dr. - it will help. Finally, take time for yourself. I read, walk my dogs, work in my yard, try to have lunch out with friends occasionally. I don't know what stage your husband is in, but if possible find an activity you can enjoy together on good days. DH and I took up kayaking this summer on quiet creeks and a small river near our home which is very calming for him. Visit this site often - i always feel better when i do!!
Deb...I'm sorry you're so down. I know it isn't your nature. Yes, you are griveing. You are young and probably thinking is this all there is? For now yes this is as good as it gets. Try to find something positive everyday. I love to read the posts under "I'm proud today because.." A cleaned out closet, a smile from our loved one, a day without crying are all really good things. I stopped using my free time to research this disease. I'm realistic enough to believe a miracle cure won't come along in my husbands lifetime. When you're living 24/7 with this you need a break from your reality. I also play games on line and (I'm embaressed to say this) read romance novels. For a short time I stop thinking about my life and what should have been. These activities give me a mini mental vacation and I feel better for having done it. I haven't found a good emotional outlet yet. Like Emily I push it down deeper and say Oh fiddle de de I'll think about that tomorrow. I think our despair comes in cycles. We go along ok for a while and then WHAM it hits you hard. Try to ride this out and know we're all thinking of you. xox cs
Deb-don't ever feel guilty about your emotions. It's tough realizing that life as you know it or hoped for is over. Only other dementia spouses can understand. We are here for you.
Thank all of you for these posts. I am so physically and mentally tired That I have been thinking I can't do this anymore. It helps knowing that others feel this way. I am praying that we all have a really good day today and that we find something to smile about.
cs, you have the same vices I do - playing computer games and reading romance novels. Of course, I also hide the novels if anyone is visiting! Why are we ashamed of them?
Have you tried journaling? This is a great way to get it all out, say it any way you want because it if for your eyes only. I find this also keeps it from going round and round in my mind. I have even found at times, by the end I will be writing something positive. For me, I have had some of my best times with God.
Dear Deb: Been there, done that. First off, do as Emily says, and it may not be easy. Long before DH had AD, I had managed to work deliberately at becoming an emotional stoic. Maybe I'd seen others come off the wall for things I thought were not all that life-shattering. Like it or not, even with AD things calm down, life goes on--that's something to remember when you think you can't continue. But cry alone in my room, oh, yes, shout at the air, "Just give me back my life," oh, yes. It's not always possible to be objective, but it can help. And she advises to do 'something.' For me, as with many, it was keeping a journal. In many ways I did not want to forget, and except for places like here, most don't want to hear about it or dismiss it, say, 'things will be OK,' stuff like that, really, they don't understand. But writing it down, for the moment, gets it out of your system and also, for me, put it in another perspective, sort of gets your ducks all lined up. And, finally, on a day when I knew I was losing it, so frightened of what was happening to me, that I went to my doctor & he gave me Xanax. Just 1/2 a pill was enough to bring me back--and I never got addicted. He said, and this is true for you and everyone, 'From now on, dear, your well-being depends on what is happening to your husband. It may not be fair, but that's the way it is.' That was good advice, something you have to live with, no option, it's up to you on how you react to it--I know, I know, not easy, but doable. We cannot separate from each other (except, if lucky, get a respite now & then). Have your days of grief and sorrow--we all deserve them--times when you feel that you cannot go on. And the day may come, as it did with so many of us, when we knew we had given our all and a care facility or full-time help would have to be. For now, we are with you, feel our cyber hugs and understanding. You are not alone.
Dear Deb, I can say I have been on this rollercoster for ten years now and when you say you want someone to take care of you, that was just one phase(a big one) of my grief process. As everyone else has said so spot on there will be MANY phases that this horrible disease will bring you through and I can only hope that you will come here for support as I have. It's amazing how good those anti-depressants are, but I still find myself crying myself home from work,(yesterday). Like the others have said try to find a positive thought or activity to give your emotions a rest. I love to scrapbook. Hugs to you. Denille
Thank you everyone for your responses. I wouldn't want to go through this journey without you. Sometimes it seems that nothing that I try works. That is when I just have to go with it and spend a lot of time listening and talking to everyone here. The things I do is spend a lot of time on the computer because if I try to get him to talk to me it is upsetting so I talk to my friends on the computer. Mainly you all. I think I am on this site at least once a day. Also, I like to read and knit. I don't know if I can be stoic or not but I have only been dealing with this for 2 or 3 years, 10 years is a long time and I hope that within that amount of time I would have learned some coping skills.
I agree that the way my DH is in this disease also has something to do with the way I will be. You are right, there is nothing we can do about it. One person I know thought she was helping when she told me that I could separate from him because he is being abusive. She doesn't have a clue...I hope she never does. While I was typing this there were two commercials on TV about dementia.
I don't feel a lot better but the fact that I know where to go for help is comforting. It is strange but when I write in my journal it doesn't sound as bad as it really is. It is almost like I am afraid someone is going to read it and so I am still careful about what I say. I think the best I can do is just ride this one out and hope that I learn somethings I can do to help.
Yes, you are grieving. You have a right to have grief. This whole thing is pretty awful, scary and just bad terrible. It is OK to know that and to say it.
If you have access to any kind of talk therapy, take advantage of it. If you need anti-anxiety drugs, ask your doctor for them and take them. I'm not on anything like that at this time, but both my doctor and my husband's doctor have asked me if I needed them (same medical group so both of them can see all records).
Like a lot of people here I journal. I use a journal on my computer and I don't print it out. Great place to vent when I need to vent. No one need ever see anything I write except me. Some times I go back and read old stuff. Mostly I don't. But on occasion it has been very interesting to see what I was having problems with a year or two ago.
Deb, try and make sure you are getting enough sleep and taking a good mult-vitamin mineral supplement. I think I am at my worst when I am tired or run down. Keep posting, it helps. Arms around, Susan
Starling, I love the idea about writing on the computer and not printing it out. I have a password on my computer and no one can even get on my computer unless I let them or they know my password. Also Susan, I don't get enough sleep I know that. I just found out since I started writing this that I have fibromyalgia and that would explain a lot of what has been going on with me physically.
Before the doctor knew it he was giving me anti- anxiety medication and Davocet for pain but my last appointment he gave me pain medication specifically for nerve pain(still taking the anti-anxiety medication, but I think I am going to have to increase it). I hope it works because he said extended use of Darvocet is dangerous for people with fibromyalgia.
I have not researched that part but I did just get done researching the new pain medication it is called gabapentin. Has anyone heard of it. I am kind of nervous to use it but he said to start using it before I go to bed and then when I find out how it goes with me I can increase taking it because it is suppose to be taken three times a day. Oh Boy, what else is going to happen to me?!?!? I am kind of glad that I have a name to what is wrong with me though because I thought I was just imagining all the pain that I was in. Could the pain that I am in be causing me to have a harder time dealing with the dementia?
Deb, of course the pain has been making it harder for you. I can' even imagine dealing with this while being in pain myself. Good that you have a diagnosis and meds, hope you get something that helps real soon.
Gabapentin is the generic name for neurontin. My husband takes it twice a day for his pains and tendency to have absence seizures and it really seemed to help him when he first started, a couple of years ago - now it's hard to distinguish between the effects from different drugs. It did not give him any start-up side effects. Sounds like it would be good for you!
I agree, when you hurt, it's hellishly hard to be able to cope with anything else! Everything is related to everything!!
Deb...I know folks with fibromyalgia who cry without any additional stress in their lives. You sound like you have a good PCP. Neurontin as others have mentioned was originally used for seizures. It is now being perscribed for fibromyalgia as it works on nerve root pain. I took it for extreme pain when I herniated 2 discs. Took it 3 times a day and worked like a charm without any ill effects. I would follow your good doctor's advice and try it at bedtime and increase it as needed to ensure good sleep and pain free days. It is not a pain killer per se and should be taken prn or as needed but on a regular basis at bedtime and if need in the morning and mid day until the myalgia goes into remission. You may not have to increase your anti-depressant once this kicks in. Then off you go on your "mini vacation" when you are feeling better!
I also have fibromyalgia. It started with chronic back pain back in 1996. They I was ok for a while, well, now it is out to kill me I swear. I was near tears in the pharmacy when a young pharmacist saw me looking at homeopathic remedies and started to talk to me. He said his Mom, boy I felt old, had really bad fibro and he had her taking 2 Aleve 12 hrs apart each day. I had to also take Carafate to coat my stomach, but the Aleve is working wonders. Two weeks ago I could hardly walk, and it hurt to touch my skin, all my joints ached like arthritis on a rainy day, now it is well under control. I really did not want to take another prescription and I'm allergic to Neurontin :o(
Deb - I also have those days when I feel I can't take anymore - and I'm crying - and I'm angry - and I don't think I can go on - and I don't want to go on.......but these feelings pass ... and I do go on. But crying and venting really do help. Of course, coming here helps the most.
Janeb - It was so comforting to me to know you also look at your DH and say I don't like you anymore. How many times have I thought that and then, like you, felt so guilty about it. It's so hard to look at the person you once knew who no longer exists. We miss the mate we had before, the person we could talk to and share our deepest thoughts with.
Knowing we can come here and vent and get the loving support we need is so wonderful. Yes, only other AD spice can relate to how we truly feel.
And, yes, the grieving goes on and on and on.............
guess i'll add that it never goes away even after so very many yrs. yesterday i was standing at the rails on the balcony looking for squirrley and it dawned on me as i was leaning on the rails -they havent changed in 10yrs only the people who sstand here have.
our first kiss happened at these rails 20yrs earlier and that thought came back flooding my memory banks. at the oddest times and places we can lose it bigtime - divvi
Divvi....funny how we try to lock our memory banks so it doesn't hurt so much...but there will be a song, a picture, even something so subtle thay we are not even sure what it is that can set us off. Everytime I think that I have made it to the acceptance stage of grieving .....not. My thoughts are with you.