There was so much discussion about loneliness - the bane of the existence of an AD spouse - that I revised a blog from a year ago, and posted the newer version on the home page today - www.thealzheimerspouse.com.
I invite everyone, new and veteran members to post comments. It's the type of loneliness only spouses of a spouse with AD can truly understand.
You know, joan, this is something I have been thinking about since yesterday. I thought early this morning, as I was dressing DH and getting him ready for the Day Care Center, this lonliness thing is like picking up the pieces in a shattered marriage. Only it keeps shattering! People don't realize that it is an ongoing heartache. It may last for a very long time and it threatenes to tear your soul apart. No wonder we secumb to illness. We must really take care....M
Since I joined this group, I am not as lonely as I was. I feel that I have found a bunch of great friends who will not judge me or criticise me, regardless of how much whining I do. The loneliness is lifted, and now I redirect that to my new friends who are sometimes going thru worse than I am...I will get thru this with all your help and advice, especially you ladies who are teaching me how to do makeup...yuk......Thanks to all of yo, and you are all heroes in my book.......HUGS to all who need it, and even bigger hugs to those who don't want them........luv ya all
The specter of loneliness enters the spouse caregiver almost inevitably during the the time when ones mate begins retreating within himself.
My sweetheart and myself had always found so many topics to talk about that we eagerly kept a mental list of the days events for conversation. We were both avid history buffs and political junkies. We enjoyed each others companay almost to the exclusion of friends. We had friends but were not dependent upon them for our leisure time.
As my love’s disease progressed, I was saddened that this important part of Our relationship was severed. Concurrently, our acquaintances. Friends and family\ seemed to vanish and even did not call or invite us to be with them. To be fair I believe they did not know what to say or how to relate to this different person who had such a flawed memory and thinking ability. I have written about the different aspects of loneliness as I encountered it (and continue to do so) My reader fellow caregiver., will recognize this unique loneliness when our loved one can no longer connect with us and we realize they never will again.
I suppose it is universally true that most spousal caregivers are very lonely especially on the weekends. Our relatives and friends have plans for Saturday and Sunday and it usually does not include us.
We live with loneliness, missing the activities that we and our loved one had immersed ourselves in and most especially the sharing of our lives with their attendant conversations.
We somehow endure these two days but dread the coming of them knowing that our estrangement from our loved one will be more keenly felt and that we must find a way to get through this reminder that we are no longer a couple but rather a person alone for now and in the future.
Someone else on the other lonliness board said it.....Midow. Married Widow. This is what I am. I am coming to the conclusion that John may never have another pleasant word to say to me. It's so sad to me that he may die with the words, "I hate you, you ______" on his lips. Acceptance. It is what it is. Looks good on paper, sounds great in a classroom. But reality sucks. I've lost my life's partner. I feel like i've lost my own life. Just no funeral and closure yet. It's so quiet here. No one anywhere. Everyone else really does have their own problems, thank you. I think the outside world sees the burden we carry and just steps aside because it IS too heavy a burden to share. I mean, what is someone who isn't going through this themselves suppossed to say to you to help? I'm sorry? And my children, step children and my own, think they're too young to have to "deal" with this.
I am new to this group and I am so comforted to read that others share my experience. My DH is still in an early stage of AD, but our relationship has changed dramatically. He has drawn into himself -- happiest remembering events of long ago, events that occurred before we met. He is content to be alone as long as he knows that I am somewhere in the house. And I feel so alone. I think of my widowed and single friends and wonder if their perception of " aloneness" is more or less painful than mine.
I find it interesting that I am lonely even when there are people with me. Everyone keeps saying, "you took care of him alot longer than I would have been able' or it's your time now. Well, I know all of that. It still does not take away the fact that I am here and he is in the nh without me. He still knows who I am and when I see him he is so pleasant now. I don't remember that days of frustration that I had but so miss the companionship. We were together for nearly 40 years. He was my soul mate. Even though it's been 8 years, I still miss all the things we did-intelligent conversation, respectfulness and truly loving each other. I say this because it's different than being in love. My 24 year old daughter is having great difficulties adjusting to this new phase for her father and I truly understand. She feels I waited too long to place him but maybe when she has spent 40 years with one person, she will better understand. I am not upset with her. I want her to have all the time she needs to adjust. My days are constantly filled with "duties" -being with my 84 year old Dad that is dealing with stage 3c colon cancer and kidney cancer. My Mom is in a nursing home for short term rehab. She nags everyone-including my Dad. I am angry at her because she has no compassion for how difficult my Dads life is. He loves her so much more than she loves him. He struggles with the sadness of seeing my dh (his favorite son in law) in his condition and the separation of his wife at a time when he needs her support most. He does not want to be alone and I feel I want to be with him-so I am. I stay most of the day to brighten his spirit, take him for rides and simple lunches, dinners. He hates "being in the house" but has real difficulty walking and needs a wheelchair. His drs are rethinking the plan for his care. They think he is too fragile to survive the surgery to remove his kidney and that chemo may not be effective now because of the delay in starting. I am heart broken for him. I cannot loose my hubby and Dad at the same time!!! I keep praying to God. These 2 men are the best people God ever made and I know life is not fair but I keep asking God why. Am I that strong to handle both?? I don't think so. My older sister has been suffer with severe depression for years and is falling apart. My younger sister has never suffered depression ( I have, plus breast cancer and a melanoma). She has no compassion nor patience for my older sister. I just want everyone to get along and not add to my stress. As I said, even when I am around all these people, I still sit and think about my dh and how much I miss him. Does this ever stop??
Hugs, Kathryn. Yes, it will stop. Probably sooner than you want.. sounds to me like you should be lining up someone other than yourself to take care of your mom.. you have your hands full without her!
Ahmen briegull. I always felt she was a selfish person and she proves it everyday with my Dad. I have siblings that can deal with her. After dh and Dad, I am done. It will be time for me. Thanks for the hugs
I am so sorry Kathryn0907, that your plate is much too full. My father passed away a few years ago; yet, his love and influence are a part of my everyday experience. I see him in my little grandson, I feel his presence when I eat his favorite foods, I carry him with me. My dad and my husband were also extremely close. My father knew that one day soon I would be faced with the loss of the two most important people in my life and he told me that I should be strong, not grieve, and remember the happy years that we all shared. Easier said than done, but I am working on it. Please take care of yourself. I hope that your physician is understanding and is someone whom you can turn to for some medication to ease you through this stressful time. I'm thinking of you.
Thanks to all of you. You are truly my salvation. Brooke, I already am on quite a bit of meds-have been for years and they pretty much work well. Thanks for the comments. I suffered with depression for years and blamed myself for not getting better until I changed psychiatrists and she prescribed a "cocktail" for me. In a few weeks, I felt like there was a heavy rain and suddenly, life seemed so crystal clear. I still see her every few months just to update but I would not give up my meds. I think they help me especially now. Thanks.