Your last sentence in your blog, Joan, is the key to your query concerning your acceptance of your new life.....you are not going to have your emotional and intellectual needs met by your husband, and there will be a void now. So even though you feel a betrayal sometimes within yourself, at least for awhile, you will now go about making a life for you alone. It is going to be difficult and sometimes a dichonomy will arise in your responsibility to care for Sid's needs and to pursue following your own path. But you are now on divergent paths in your remaining journey of life....I didn't know and still don't know what God has determined is my husband's inner life but I am determined to find meaning and fulfillment in what remains of mine. I didn't choose this life apart from my sweetheart and wish with all my heart that we could have continued our wonderful relationship and love. But I finally confronted the inevitable as you now have and it followed that I began to look for ways to fulfill my physical . emotional and intellectual life. I have found a good friend, a woman who is a widow, who goes shopping with me, we have lunch together, and she keeps me from being lonely. She understands my grief over my husband and is a good listener. I have joined bible study groups, attend church, and go to functions with old friends. My immediate family, ie. children, grandchildren give me a sense of purpose, I write poetry which helps fulfill me emotionally. I have found intellectual joy in researching ideas, and learning about this fabulous world of ours.
Each day has been a struggle but eventually you will notice you have made a gradual shift away from your old life and are better able to deal with the "beloved stranger" . You will still be his advocate. making decisions for him, still loving him but no longer in love, and somehow you will find peace within. I have my moments of rage, sadness, utter desolation, but they are not always with me now . I think I will grieve for as long as my love is alive within his prison and I will be sad for our loss of one another but I am adapting and continue to live now at least in some measure of contentment.
Even before I read that you write poetry....I felt you had the heart of a writer.... you write beautifully with your abilty to put feelings into words....
I am one of those who has started to make that gradual shift. And I am learning to live with daily grief..
I wasted so much effort with the whys and what ifs. It is what it is. We may not like it but we do have to accept the fact that our lives will never be the same. Nothing we did or didn't do would have changed the course.
I accepted the loss of my husband and best friend a year and a half ago, as I've stated in these discussions since I found Joan's site. I have begun my dreams of what I hope for my future afterwards, because it helps me keep from grieving constantly. I still have spells of emotional outbursts, anger, and sadness, but I have learned to tell myself that this is my little boy in my husband's body and it is the AD causing him to do this. I will love and care for him until he dies.
I miss having my husband to talk to, to listen to, to plan with, to laugh with, to travel with, to play bridge with, to go to Church with, and to hold me up when I'm down. I miss my best friend so very much. It's hard being lonely when you have your DH and daughter at home and caring co-workers during the day, but I am lonely. Never alone, but missing the other half of myself. My DH.
My biggest struggle, at our current stage, is not really acceptance. It's seeing how my husband doesn't really understand why our relationship is not close in the way it once was. Despite the fact that the parts of his personality which have left were the parts that made me feel grounded in the relationship, delighted by his company, and intellectually fulfilled--he retains the part that realizes things are different--that I am different, but he's unable to really understand why. I feel guilty (I know, it's unnecessary guilt) that I can't put on a big act to make him think it's the same as ever, but the thing is--how I was in the relationship...what it brought out in my personality, was a direct function of the chemical interaction between him (then) and me. And I can't fake it or do it alone. So, yes, I do try to find new ways of enjoying life, while being as supportive as I can.
One of my friends told me one time that part of the way to survive is to do one thing for myself each week and that will help me through. My DH and I have a 23 year age difference. I always knew and accepted that I would probably outlive him so have made a point to spend time with friends on a regular basis without him. This and work have been my life savers as I have been going through the disease. Both have given me something outside of the AD world to think about. What is going on in my AD world has impacted my friendships and jobs, but having them has also helped anchor me as my DH and achor has slipped away.
Joan, I find that as my DH does/says more things (and more often) that are so strange, that it is actually easier to move on to caregiver. I am now seeing the times of "normal" stuff as the exception to his reasoning and thinking. Yes, he says he can take care of his meds, but there was that time he took the sleep meds twice in an evening, so I need to assume that will happen more, not see it as just a slip. Yes, he can make that phone call, follow up on that issue, etc. But the times that he did that were so confused and inaccurate are now what I expect, and have to prepare for. It it goes well, great. But I have to be in charge of knowing who and what he is dealing with and watch to help or fix it as necessary.
Yes, the paranoia, accusations, etc. are tough, but as he continues to confuse arguments, issues and facts, the paranoia and anger become just more symptoms of the disease (not that we don't medically address those as much as possible), and the hurt is becoming less of a problem as my awareness of the scope of his deficits increases.
Yea, it still sucks. I hate being in charge. I hate losing my DH and relationship as I knew them. We now have a new "normal" that is getting a little easier. Gradually, just like the way this disease progresses. In the same way that his abilities fluctuate, my ability to accept the changes also fluctuate. I only know that he will fluctuate less and I will accept more.
This is a very difficult question and i am not sure any of us know the answer to it. we are only COPING and by no means have conquered or 'get it' on a daily basis. some days i say ok this is how its going to be, me the caregiver and him the patient. and that day goes well. then i am cleaning and see a grogeous picture of us on a greek cruise, and i sob incessantly for the whole day. this has been going on for 9yrs and even today as i adjust to DH declining more with these horrific myclonic jerks that are from the disease literally eating his brain, i lost it again today. the sheer agony of the ups/downs and nothing stable any more is agonizing. i am one who plans and gets things done and usually a noncomplainer and happy go lucky person full of optimism and good natured. this disease has made me into jekyl/hyde on many occasions. he lives in his world from min/min -i am surviving in mine day/day and if there is a hell on earth this is it. theres no set rules which work for one person will make another guiltridden and depressed. i believe in karma and things happen for a reason. i do know i am a more tolerant and compassionate person today than 15yrs ago and that a good person like my Dh has a good caregiver who loves him and is a tigress in his defense . all i know for certain is nothing about this disease but the impact it leaves on those left behind. divvi
Divvi, I believe in Karma too. I wish I could shed a tear now & then, but I need to be a fighter for my own survival. I am the only one looking out for me now. I'm really sorry you had a bad day. I don't accept guilt for something I haven't caused. I think you're really worn down. And no wonder.
Joan: One of the wives in our early-onset support group described the "transition" that we all have to make from being a wife(or husband, as the case may be) with a husband, to being a caregiver for a disabled person, who happens to be our husband. It doesn't happen overnight, and it doesn't happen all at once, but as it happens, it becomes easier (in a way) to make a "new" life. Because I have one daughter at home, and another in college who still "needs" me, that of course is the primary focus of my new life, and I will continue to work at my job, at least parttime, as long as I can juggle that with taking care of DH. In addition, as Carewife alluded to, several widows who were acquaintances of mine took me under their wings as soon as they heard about the diagnosis----they all knew exactly what I needed at the time. I've also gotten involved in some new women's groups at the church----I really like that because its a mix of ages. And finally, we've been blessed that all of our friends continue to include us in social events, and I sort of pick and choose what my husband will enjoy (we go together) and what I don't think he will (I go by myself). The first time I went to a big party by myself (in fact, DH told me he didn't want to go, it was too late), I was scared, but I had a great time and realized my friends wanted me there. The reality is, lots of people are widowed, divorced, or sometimes the spouse is just sick with the flu or out of town! Do I miss my husband, sure I do, and I still cry/sob sometimes, and I know the void will never be filled, but I truly want as happy a life as I can have, given the circumstances, for all of us.
Early on I felt guilty enjoying activities alone. I felt awful that DH would never again enjoy good fellowship of friends. Then I realized that my activities were not part of a balance scale. My having a good time did not take away from his part of the balance-the disease did. Of course I would rather he be with me but that is no longer possible.
Bluedaze, thank you for the balance scale analogy. I really struggle with "survivor's guilt", that I am the healthy one, that I can still enjoy things that he can't. You are right, my ability to still find joy does not take anything away from him. I am going to hold onto that.