The Long Quiet

Posted by bill2001 @bill2001, Sep 1 6:46pm

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

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Your situation is terrible. You're suffering way more than your wife and, in my opinion, you need to rescue yourself. I'm sure people have offered lots of suggestions for things you could do, and I understand how inevitable it is to subside into the long lethargy of caring for someone like your wife, but you have a right to live your life as fully as you can. Read over what you wrote here and imagine someone else was saying it. What would your advice to them be? You need to expend as much effort on your own behalf as you do on your wife's. It's not selfish to do so. My husband has Alzheimer's and about a month ago he had a bad fall, probably caused by Afib. He was in the hospital for two weeks and had a pacemaker put in to stabilize his heart. The dementia worsened and after over nearly two weeks in rehab doesn't appear to be getting any better. In other words, he's suddenly worse off than he was. I've arranged for him to go to a wonderful senior living facility that will give him all the things I can't: company, people to listen to his stories, activities, lovely surroundings, and more. It's part of the Kisko Heritage Greens system and I can't recommend them highly enough. I'm 79 and have an ascending aortic aneurysm and rheumatoid arthritis. I'm in pretty good shape, despite those conditions, and I don't want to stop living a full life until my body tells me I have to. I love my husband and am working like a Trojan to do everything I can for him--much anxiety and exhaustion--but I know I'm doing the right thing by finding him this new home. He doesn't know he's going there. That's a hurdle yet to be gotten over and I'm nervous about it, but I hope things will be better for both of us. He'll be only about a ten-minute drive from our house. I know he'll want me to visit everyday, and I probably will, at least at first, but, honestly, I want my life. I'm a good wife, but I'm not a martyr. You shouldn't be either. IMHO

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Thank you for sharing. It sounds incredibly difficult to deal with all that. This is the side most people don't see, and the phrase "The long Quiet" describes it very well.

What are some of the things that help you find a bit of peace? I admire your strenght

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Dear Bill,
We’ve been concerned for you…I’m very glad you posted. I have no advice, as we are a bit behind you on this journey, but Pamela78 makes some excellent points…however, everyone’s situation is different. Please know we care, and post again when you can.

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Hugs and virtual support to you, Bill.
Thank you for bringing up the quietness. I am so lonely, it hurts.
I very much miss conversations, actual conversations and discussing important things, current events, life plans, etc.
I miss my husband's intellect and his educated mind. I miss him. I miss him, times a million.
Once again, virtual hugs. 🫂

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Profile picture for pamela78 @pamela78

Your situation is terrible. You're suffering way more than your wife and, in my opinion, you need to rescue yourself. I'm sure people have offered lots of suggestions for things you could do, and I understand how inevitable it is to subside into the long lethargy of caring for someone like your wife, but you have a right to live your life as fully as you can. Read over what you wrote here and imagine someone else was saying it. What would your advice to them be? You need to expend as much effort on your own behalf as you do on your wife's. It's not selfish to do so. My husband has Alzheimer's and about a month ago he had a bad fall, probably caused by Afib. He was in the hospital for two weeks and had a pacemaker put in to stabilize his heart. The dementia worsened and after over nearly two weeks in rehab doesn't appear to be getting any better. In other words, he's suddenly worse off than he was. I've arranged for him to go to a wonderful senior living facility that will give him all the things I can't: company, people to listen to his stories, activities, lovely surroundings, and more. It's part of the Kisko Heritage Greens system and I can't recommend them highly enough. I'm 79 and have an ascending aortic aneurysm and rheumatoid arthritis. I'm in pretty good shape, despite those conditions, and I don't want to stop living a full life until my body tells me I have to. I love my husband and am working like a Trojan to do everything I can for him--much anxiety and exhaustion--but I know I'm doing the right thing by finding him this new home. He doesn't know he's going there. That's a hurdle yet to be gotten over and I'm nervous about it, but I hope things will be better for both of us. He'll be only about a ten-minute drive from our house. I know he'll want me to visit everyday, and I probably will, at least at first, but, honestly, I want my life. I'm a good wife, but I'm not a martyr. You shouldn't be either. IMHO

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Respectfully, I think you may have missed Bill's points. Or maybe men are more loyal than women. I'm the same as Bill, but a couple of years behind. In fact, my wife and I were divorced, and when she was hit with this monster, I remarried her so I could care for her.
I didn't read into it that Bill wanted to present as a martyr; in fact, just the opposite. He gave numbered reasons, and very well thought out, I might add, that he still has the love of his life at home with him. He has empathy, as if he were her; how would he feel under the circumstances( if he were her and she were him)? I don't want strangers cleaning my wife up. I don't want her to be embarrassed or handled roughly when she's being changed. I am the best care she can get, paid or unpaid. Placing a loved one in a facility so "I can live my life" WHAT? Like Bill, I still work full-time, but remote now, so I can care for Karen. I have an aortic aneurysm, COPD, two knee revisions, and five eye surgeries that left me blind in my right eye. I'm not a martyr. She's my wife! That's why I care for her.
We each have to make our own decisions, but best not to work out our own decisions superimposing the underlying reasons on others as if their decisions are less than what they say.

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Bill, I take my wife on rides to no-where. We always travel on back roads (never highways) and it seems like she starts opening up after about 45 minutes or so because she sees something that is interesting to her. Might be worth a try?

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Profile picture for jimandkaren @jimandkaren

Respectfully, I think you may have missed Bill's points. Or maybe men are more loyal than women. I'm the same as Bill, but a couple of years behind. In fact, my wife and I were divorced, and when she was hit with this monster, I remarried her so I could care for her.
I didn't read into it that Bill wanted to present as a martyr; in fact, just the opposite. He gave numbered reasons, and very well thought out, I might add, that he still has the love of his life at home with him. He has empathy, as if he were her; how would he feel under the circumstances( if he were her and she were him)? I don't want strangers cleaning my wife up. I don't want her to be embarrassed or handled roughly when she's being changed. I am the best care she can get, paid or unpaid. Placing a loved one in a facility so "I can live my life" WHAT? Like Bill, I still work full-time, but remote now, so I can care for Karen. I have an aortic aneurysm, COPD, two knee revisions, and five eye surgeries that left me blind in my right eye. I'm not a martyr. She's my wife! That's why I care for her.
We each have to make our own decisions, but best not to work out our own decisions superimposing the underlying reasons on others as if their decisions are less than what they say.

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Jim, I feel the same as you towards my wife. We are in our 56th year and I don’t want ANY stranger touching, cleaning or dressing my wife.

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Profile picture for jimandkaren @jimandkaren

Respectfully, I think you may have missed Bill's points. Or maybe men are more loyal than women. I'm the same as Bill, but a couple of years behind. In fact, my wife and I were divorced, and when she was hit with this monster, I remarried her so I could care for her.
I didn't read into it that Bill wanted to present as a martyr; in fact, just the opposite. He gave numbered reasons, and very well thought out, I might add, that he still has the love of his life at home with him. He has empathy, as if he were her; how would he feel under the circumstances( if he were her and she were him)? I don't want strangers cleaning my wife up. I don't want her to be embarrassed or handled roughly when she's being changed. I am the best care she can get, paid or unpaid. Placing a loved one in a facility so "I can live my life" WHAT? Like Bill, I still work full-time, but remote now, so I can care for Karen. I have an aortic aneurysm, COPD, two knee revisions, and five eye surgeries that left me blind in my right eye. I'm not a martyr. She's my wife! That's why I care for her.
We each have to make our own decisions, but best not to work out our own decisions superimposing the underlying reasons on others as if their decisions are less than what they say.

Jump to this post

@jimandkaren I love all the statements that the husbands in this group are making!! “She’s my wife. That’s why I care for her.” Beautiful!

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Profile picture for pamela78 @pamela78

Your situation is terrible. You're suffering way more than your wife and, in my opinion, you need to rescue yourself. I'm sure people have offered lots of suggestions for things you could do, and I understand how inevitable it is to subside into the long lethargy of caring for someone like your wife, but you have a right to live your life as fully as you can. Read over what you wrote here and imagine someone else was saying it. What would your advice to them be? You need to expend as much effort on your own behalf as you do on your wife's. It's not selfish to do so. My husband has Alzheimer's and about a month ago he had a bad fall, probably caused by Afib. He was in the hospital for two weeks and had a pacemaker put in to stabilize his heart. The dementia worsened and after over nearly two weeks in rehab doesn't appear to be getting any better. In other words, he's suddenly worse off than he was. I've arranged for him to go to a wonderful senior living facility that will give him all the things I can't: company, people to listen to his stories, activities, lovely surroundings, and more. It's part of the Kisko Heritage Greens system and I can't recommend them highly enough. I'm 79 and have an ascending aortic aneurysm and rheumatoid arthritis. I'm in pretty good shape, despite those conditions, and I don't want to stop living a full life until my body tells me I have to. I love my husband and am working like a Trojan to do everything I can for him--much anxiety and exhaustion--but I know I'm doing the right thing by finding him this new home. He doesn't know he's going there. That's a hurdle yet to be gotten over and I'm nervous about it, but I hope things will be better for both of us. He'll be only about a ten-minute drive from our house. I know he'll want me to visit everyday, and I probably will, at least at first, but, honestly, I want my life. I'm a good wife, but I'm not a martyr. You shouldn't be either. IMHO

Jump to this post

Bill2001-thank you for your eloquent post. My “long goodbye” started with a “minor” stroke during my life partner’s heart valve surgery about 10 years ago. It’s been a long and painful journey. I thought I could take care of him in my home forever.

I was finally forced to move my life partner of 49 years to a memory care facility in June 2025. He caught a virus waiting for me with a mask in the radiology waiting area. We both got sick but he developed pneumonia followed by fluid in lungs. Every hospitalization and infection takes his brain function down a notch, but doctors and friends helped me to recognize that I could no longer be his only caregiver, particularly due to my rapid health deterioration from cancer, chemo and radiation. I shed a lot of tears with his life change but I know now that that the move was best for both of us. I think most caregivers do the best they can for the person they love. We are fortunate to be able to afford to pay for a nice facility.

I drive to his assisted living facility to bring him a decaf cappuccino daily around 4 pm. I administer his pm meds, brush his teeth, shave his face and change his diapers b4 he falls asleep. I need more rest now and am no longer capable of more than 4 hours daily so I am grateful to have been pushed by others for this change. I still drive him to the ER when I feel something is wrong. Most recently we both caught Covid for the 1 st time after one of his housemates went to dinner with family and returned with an “cold”. I sat in the ER for hours again, but he needed to be hospitalized for IV antibiotics and antivirals. I take him for medical appointments, long rides and whale watching from the car. I do the best I can to make him happy in our current life phase.

Our daily interactions vary. Yesterday he did not know who I was. We talked about things on his mind that were not real. I mostly agree when I can and give him support and someone to talk with. I hope we have a better evening today. I don’t know who he will be or if he will know me. I am grateful that we have not yet arrived at the “long quiet”.

Pamela78-does your husband take aricept? My partner needed a pacemaker after his cardiologist disagreed that aricept causes heart issues in a very small group of people. I started tracking his heartbeat throughout the day and brought him to the ER when his heartbeat dropped into the 30’s. He continued to develop more heart issues. Fortunately his internist knew of aricept risks and changed to memantine following a heart related ER visit. Aricept worked better for his dementia, but his heart works better with memantine. We also had to add seroquel for anxiety, stress and confusion following medication change. I hate increasing drugs, but we do the best we can as circumstances change.

Thanks again for posting. I wish you all the best.

To other posters-Please don’t judge other caregivers. We are all doing the best we can for our loved ones.

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Profile picture for katme @katme

Bill2001-thank you for your eloquent post. My “long goodbye” started with a “minor” stroke during my life partner’s heart valve surgery about 10 years ago. It’s been a long and painful journey. I thought I could take care of him in my home forever.

I was finally forced to move my life partner of 49 years to a memory care facility in June 2025. He caught a virus waiting for me with a mask in the radiology waiting area. We both got sick but he developed pneumonia followed by fluid in lungs. Every hospitalization and infection takes his brain function down a notch, but doctors and friends helped me to recognize that I could no longer be his only caregiver, particularly due to my rapid health deterioration from cancer, chemo and radiation. I shed a lot of tears with his life change but I know now that that the move was best for both of us. I think most caregivers do the best they can for the person they love. We are fortunate to be able to afford to pay for a nice facility.

I drive to his assisted living facility to bring him a decaf cappuccino daily around 4 pm. I administer his pm meds, brush his teeth, shave his face and change his diapers b4 he falls asleep. I need more rest now and am no longer capable of more than 4 hours daily so I am grateful to have been pushed by others for this change. I still drive him to the ER when I feel something is wrong. Most recently we both caught Covid for the 1 st time after one of his housemates went to dinner with family and returned with an “cold”. I sat in the ER for hours again, but he needed to be hospitalized for IV antibiotics and antivirals. I take him for medical appointments, long rides and whale watching from the car. I do the best I can to make him happy in our current life phase.

Our daily interactions vary. Yesterday he did not know who I was. We talked about things on his mind that were not real. I mostly agree when I can and give him support and someone to talk with. I hope we have a better evening today. I don’t know who he will be or if he will know me. I am grateful that we have not yet arrived at the “long quiet”.

Pamela78-does your husband take aricept? My partner needed a pacemaker after his cardiologist disagreed that aricept causes heart issues in a very small group of people. I started tracking his heartbeat throughout the day and brought him to the ER when his heartbeat dropped into the 30’s. He continued to develop more heart issues. Fortunately his internist knew of aricept risks and changed to memantine following a heart related ER visit. Aricept worked better for his dementia, but his heart works better with memantine. We also had to add seroquel for anxiety, stress and confusion following medication change. I hate increasing drugs, but we do the best we can as circumstances change.

Thanks again for posting. I wish you all the best.

To other posters-Please don’t judge other caregivers. We are all doing the best we can for our loved ones.

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The best part of your post is the whale watching. As for the rest, you have not only my sympathy but my admiration. You need to take care of yourself too, you know. Let the professionals take on some of the load. My husband prefers baths to showers but his new apartment only has a shower. He resists using it, so I've decided that I'll have to get in there with him. That might do the trick. Not my first choice, but one does what one must. Isn't it amazing to find that you can do things you never dreamed you could. My husband takes memantine and Xerelto, among other things. He also has a heart monitor that sits beside his bed to remotely monitor his heart as he sleeps. I think all of us are heroes.

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