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The Long Quiet
I am quickly approaching ten years as a caregiver for my dear wife with late Stage 6 dementia. Alzheimer’s and dementia have long been known as The Long Goodbye because of the painfully long duration of the disease. No one knows how long their journey as a caregiver will go on, but I never imagined myself being locked into it for a decade.
Looking back, my long journey as a caregiver has gone through several phases. They roughly represent the stages of the disease itself. I have memories of 2015 and 2016 when my wife was still self-sufficient and self-aware; I have identified these time periods as Stages 2 and 3. Life was still mostly normal, with occasional signs that “something is wrong here” every now and then.
My existence now is best described as The Long Quiet. It is made up of years and years of no visitors, no conversations with my wife, very few phone calls, and very limited outings. The effort it takes to “go out and have fun” has long since ceased to be worthwhile. Most of my friends and family have moved on, except for the occasional phone call to check in.
Between feeding sessions, bathroom visits, showers, and diaper changes, my wife sits practically catatonic on the sofa “watching” television. Sometimes I play some music to brighten the mood, even though her response to music is also fading in this late dementia stage. When the television is off and the music stops, the quiet in this house is deafening.
There are no visitors. No laughter. No conversations. No intimacy. No smiles. No telephone ringing. No invitations. No communications. No response if I ask my wife a question or try to engage her. This Long Quiet phase has been going on for about two to three years, roughly her time in Stage 6.
Do you remember when you were a kid and you would give someone “the silent treatment” if you were angry with them? Caregivers are on the receiving end of the silent treatment for years on end. Marriages end when communication stops, but we must endure it because of “the disease.” Our suffering is not just changing diapers and lack of outside activity; we are persecuted by the disease day and night by this god-awful Quiet.
This is why I do not post here as often as before. Nothing is changing here. There is only silence for years on end. If my wife were well, I may have retired by now. There is no reason to retire now, as work provides some measure of conversations and normalcy.
Stay Strong My Friends,
Bill2001
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I am just so lonely now that my husband has developed dementia. The doctor calls it mild-moderate, and I know it could be so much worse. He just wants to stay home, and I sure wouldn’t leave him alone. Family members think he is doing really good, for his age , 92. They don’t see all the changes. For me, it hurts terribly, to see the changes from what he was.
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12 ReactionsI'm sorry for how you feel. I feel the same way and my husband is 78 and wants to stay home. It doesn't make easier when they have MCI - mild moderate whatever, it's still the same diagnosis where we feel we don't have time left.....before things progress. But at 92, at least you've gotten to enjoy him, for a long time and have wonderful memories of a man with a mind that was once more active. I know that doesn't make it easier but with this diagnosis we just need to find some gratitude in it all. I worry constantly about my husband, the things he loses, whether he looks pale on a given day, and what that means. I'm just trying to draw from more faith, and ask God to help us through this every day. Also, trying to manage my own stress, with my blood pressure off the charts due to everything taking place. We just have to find some peace and gratitude, I don't have MCI yet I see changes in myself, hair loss, high blood pressure, I think accepting changes in any one is hard, but we have to accept and move forward. Maybe it's good that family members think he is doing really good. I find sometimes, that's their way of handling and/or being in denial. I share in your thoughts and this MCI caregiver does know how you feel.
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7 ReactionsOh Bill, I'm sorry for your QUIET. And I do appreciate your post. My husband was diagnosed with MCI - mild recently and I see the Stage 2 differences your note talks about. Although he's self sufficient although forgetful, I also remember my good friend and neighbor in her early on and later stages, and what her husband went through although he was in so much denial in getting her quality care. I fear this disease, and I fear what's to come. I read your note, and I'm sad, but for better or for worse, we love our loved ones and want to do what's right even though their slow decline makes it impossible for us to enjoy the world around us. I'm going to remember your kind post and I thank you for reaching out today. I hear you, so even if you're life is QUIET, you do have people out here, going through similar stages, that care. My best, to you and your loved one.....
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11 ReactionsWe haven’t entered the totally quiet stage yet.
I’m sure people think I’m lying to them when I explain my husband’s decline because when we have visitors he is really engaged and his old self except for the ability to express himself sometimes and word retrieval issues.
It is a nasty way to have to spend the last part of our lives, but I can’t see a way to bypass it.
Bill, I’m happy for you that you still are able to work. I hope that brings you some sort of connection and you like the people you work with.
Stay well,
peace, Cheryl
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8 ReactionsI can so relate to what you are sharing about your loneliness. My husband too has moderate dementia. I cannot leave him alone in the house. It would be like leaving a toddler alone. This keeps me from going out and doing the things that I enjoy so much. I have a baby monitor so I can be out in the garden and still know when he has gotten out of bed. It is so painful to see him as he is now when he was so smart and capable and funny before the dementia journey began. Family and friends can't know the extent of the changes you see because they don't live with him. I have found comfort and support in this space where I can share my situation with others who understand. The posts here remind me that I am not alone. I have researched and educated myself on the positive approach to caring for someone with dementia. It reminds me to look for the things that my husband can still do and let go of the things that he will never do again. I also bought a daily reader of devotional readings for caregivers that I start my day with. It helps me remember that there is a higher power that will always be with me on this dementia journey. Reach out to others that are on the same journey. It helps to share what you are feeling with those that can understand. You are not alone. May God bless you and your husband.
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14 ReactionsI can so relate to the isolation. I think for me it is the hardest part of this journey.
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6 Reactions@ocdogmom Thank you so much ! It helps to “know” someone else understands.
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2 Reactions@kjc48 I really appreciate your comments and thoughts. Good to know you understand and care.
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1 Reaction@ocdogmom Yes, and we live “way back”.
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1 Reaction@dederickve And, I’m a dog mom, too !
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