While I so appreciate all of the members of this group and have great respect for your abilities to convey your feelings and thoughts so spontaneously and to gain strength from each other, I seem to be unable to do more on a routine basis than just pop in once in awhile for a quick check to see how you are all doing and see if I can glean a bit of new info. I have found that when I have a few moments to gather myself at the keyboard, I can journal and today I wrote the following:
Caring for a spouse with dementia is like living on the edge of an abyss. Every so often I fall in and cannot seem to climb or drag myself out. I lay there and wallow in self-pity, exhaustion, frustration, anger, worry, fear, hopelessness. Rarer still, I manage to crawl out, clean myself off and get on with some semblance of a normal life. But, no matter how hard I work to avoid falling back into it, undoubtedly, I do. Lately it seems that I spend more time inside the abyss than outside; I am more and more exhausted by my efforts to keep my self from dying there.
Weejun - First, I'm glad you checked in. Second, although eloquently spoken, is it all that hopeless? I feel exactly the same way most days, but I can't dwell there, for I must have some hope. Journaling is a very special tool, someplace we can say in thought what we may never speak aloud. Thank you for sharing. You have brought me to a reflective state, and maybe I needed that. A diagnosis of AD does indeed send us to the abyss. Take good care. ~Di
Weejun - Keep that journal, you have a vivid way of expression--we all know exactly what you mean. It will serve as an outlet--we caregivaers all need that in one form or another. Keep posting your thoughts and let's see what others have to say. Your connection to those also going thru it will understand and grow stronger. We don't want you to die in that abyss, or anyplace else. Won't help anything or anyone. Good night, now.
Weejun..when you fall into that abyss, just whisper to us, and you will find that there more of us there than you can see. That abyss is visited very often by most of us, and we often fail to realize that we are not in there by ourselves. As a matter of fact, there is a party being planned in the abyss..There are many people there just waiting for someone to bring food and drinks........
I have never heard it expressed so well. But remember, as phranque said - we all share your frustrations and pain. Although we cannot change the path we are on, we can support one another.
on another site i belonged to before it closed down, we had the 'rope of hope' that was used to pull someone out of this exact same black abyss. with all the members pulling they never stayed down their long. i am throwing the rope down to you weejun, grab hold and we will lift you out, know we are all on the other end pulling for dear life. divvi
Beautifully expressed by both weejun and divvi. I usually find myself in the abyss from 4 or so in the morning. Once I have seen day break, I can usually crawl out with some semblance of renewed hope and strength.
Talking about the abyss and Joan blogging about the dark tunnel sounds like when I was in a deep depression. I remember when in counseling to talk about the pain I would fixate on one spot of my counselor and go into a dark hole (abyss is probably a better word). That is where I found my pain - shut up in a dark hole. She asked me one time where I went to and I explained it to her. She had never had a client do that. I can still feel the fear I had in there - fear that the pain would be so overwhelming that I would never come out of the dark hole. It seems every time I think I have left it for good, something will come to remind me it is there lurking. Now it is aMCI and who knows when if or when it will go on to AD.
I avoid facing my reaction to the changes in our life. I didn't know why but I think I do now - fear of going back into that hole. The loss of internet last week was good as I found I was having a reaction to reading here, being consumed into finding out all I can about this disease. My chest was getting heavy. The stress of the last few months was catching up to me. While I had minimum exposure, the last few days the pain/heaviness has subsided, so I know it is stress - finances, work (lack of), boredoms, and this disease.
Someday I will have to go off by myself and cry. Cry for what will never be and the different future we will now have. Someday I will allow myself that luxury, but not now. The fear of crying is that the pain will get so great that it will be unbearable. Anyone know what I mean? When I cried in counseling I thought the pain would kill me. I was raised by a father that didn't approve of crying, so I did not do it very often, so I had 45 years of pain to let out. I cry inside but we all know that does not release anything but does the opposite - build up stress inside and can hurt us physically.
When old posts are brought to the top sometimes it hurts to see how many members are no longer with us. First hope is lost-and then the spouse. We are so lucky to have divvi with us from the beginning.
What Charlotte said is the way I feel now. We have just begun this journey and I can't cry and that may be from fear. I feel overwhelming sadness most of the time. I feel jealousy when I see folks with travel trailers - 5th wheels - etc. as this was our hobby and it will never be again. I've been gradually bringing things in from our "other home" and I find I can't get much at a time always thinking how could this happen to us - how could such a capable man become so incapable so soon? And he still can do many things for himself not too dependent yet but do I feel sorry for us - you bet! Maybe one day when the tears finally come I'll know I've come to acceptance. So for now jealousy and self pity - what a sorry person I've become. May those who have it much worse forgive such a selfish, self-centered person.
Dear Weejun, I copied and pasted to my desktop your journal entry as it is just how I feel. I would have added, in my case, one more element and that is my constant fight against resenting others who have a normal life which has been in my face most notably this past ten days as the girls post FB pictures of the wonderful time they are having with friends back on the East Coast as they enjoy the gorgeous colors of fall. It makes me feel so left out of life as there is not much here to engage in without DH either being left out or having him along and it is as if we are at home having to keep an eye on things to make sure he is ok. I don't think I ever really understood what real jealousy and envy was until now..Oh sure, we will say " I wish I could redo my kitchen like >>>>>>> has just done hers to the tune of 10K" But that is not real jealousy as we don't wish they couldn't..we admire what they did and wish we could as well. But this dementia life robs us of the opportunity to do things. I find I envy seeing my neighbors going for a walk together...yeah something as simple as that we can't do anymore...a nice evening stroll after dinner.... I think the kids must wonder " well why don't you hire someone to come in so you can get out" well the answer is I will need resources when the day comes he is in a NH......then those bucks for a day off here or there rather than the way things are now where I can steal an hour or two here and there will be needed.. I feel hollow inside and heart broken all the time.
I don't know what it is about this disease. It's a strange critter. I'm trying to plan a trip to take Jeff on. (I know that's a crazy idea with many AD people, but since Jeff's variant is the visual one--PCA, we're dealing with a different set of parameters and travel is possible, just different.) But it's the crazy way this illness sucks out my gumption and bravery that's making it hard for me to commit to anything. I go to make a call, or book something online and suddenly I'm in the pit and can't proceed. I'll get through it, it just takes more time. Once I've booked some things I'll feel braver about carrying out the action plan.