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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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@bill2001
I completely understand your decision, stubborn or not, and feel similarly about my situation. The cost of care at a respectable facility is unmanageable and I am doubtful that I or my husband would be happy with the care, quality of the food, and the environment. As you stated, the time may come when I have no other choice, but to do it at this stage feels financially wasteful and unnecessary. As you stated, I would still be alone, maybe I would feel even more alone without the remnants of my husband’s being in the house. Sometimes I sit with him and try to remember what it was like before the onset of this insidious disease. I’m 8 years in and it’s getting harder to remember what it was like “before”.
I too feel blessed. I was able to stop working full time at an earlier age than planned to care for him and can draw on my hard-earned savings for our expenses in “retirement”. This is certainly not the retirement that we had planned, but it’s what we have. Each time he loses a little more of his independence and abilities, it seems like I am losing the battle, even though I know there is no way to “win”. I recently bought him all pants with elastic waists to make it easier for him to use the bathroom independently. It was difficult to get the belt, snaps and zipper down in time to avoid an accident. While this solution resolved the problem (for now) it seems like another loss and another step into that future where he is totally dependent on me. He can still independently shower and dress although I have to prompt him to do so and it is taking longer and longer for him to accomplish these tasks. It is very lonely and it seems that these small losses mean more to me than to others - it seems like such a small thing to others but to me it just makes me so sad.
Thank you for your prayers - I need them - and I will continue to pray for you and for everyone dealing with this type of situation that we all have strength, wisdom and peace.
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15 ReactionsWe’re only in this new Alzheimer’s life for 2 1/2 years and I know this is the ‘easy’ part yet I get frustrated for him. He’s 79 and otherwise healthy. I only pray I can care for him at home.
May God bless you and allow you to feel His love and support.
Sandie
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6 ReactionsMost nights my wife doesn’t know me and just wants to watch Blue Bloods (every night🥺) but recently I found a box of old pictures (40+ years old) and had them digitized. When I started showing them on the tv, she came alive and remembered the locations and people in the pictures 😳. Now I show them just about every night and she is talking and asking questions 👍👍😊. I love it when she is talking and asking questions because it makes me realize my wife is still with me.🙏
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24 Reactions@tunared
Beautiful way to stay reconnected. Kudos to you for doing something that brings back memories and warms your heart! Thank you for sharing.🫂💞
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5 Reactions@cide8620, how are you doing today?
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1 Reaction@shenery, welcome. Will you be celebrating Thanksgiving with a group of people/family? How do you navigate social gatherings? Any tips?
My wife is in the late stage of 5. She still talks some but 80% of time I do not know what she is talking about. I just agree and move on. There are no conversations anymore. Her family calls infrequently now. I am trying to to keep in touch with friends and family but it is hard to do. She leaves me a little at a time and I die a little at a time. Death by a thousand cuts i guess. I too work a few days a week just to get away. I have a caregiver for those times. Does she still recognise you? I think when she quits knowing who I am I will place her in a memory care. Probably sell the house and rent apt. nearby. I will still see her but I will try to start enjoying life a little. I am not sure if my guilt of doing this will let me or not. anyway, I am in your boat also.
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4 Reactions@trav77 my wife doesn't know me pretty much every night but she does know me every morning when she wakes up. I want her to stay with me forever but I know (depending on her progression) it maybe only wishful thinking. When it comes to the point when she doesn't know me at all, I will probably reassess my plan but the plan will be whatever is best for her.
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4 ReactionsThank you for writing this. I noticed my husband's occasional lapses in memory in 2001. He has an advanced degree, is very bright, and he read a lot so the events were separated by several months. In the last 5 years I have watched my husband completely change. His mood can change in a second from being funny and silly to being mad and mean. He can go silent and pensive for an entire day. I have stopped asking what is wrong because he does not make any sense and often will say "well, you, you just" and that is all he will say. He tells me I have said things that I would never say because it makes no sense, but he insists that I have said it. I have always cooked as we did not like to eat out, but now he likes nothing I cook. A beef tenderloin is too tough (not) or he says he has never liked beef brisket when that has been one of his favorites. After he has had one of his silent days from anger, he will tell me he loves me several times but I have to say that a large part of the time I feel like he just does not like me. We are having our 56th wedding anniversary this week although he has talked about I know that he does not really understand. He is in total denial and has refused to go to the doctor until I finally forced him. He just had an appt. at the VA doctor and he was furious about it. He didn't speak to me the rest of the day. The following day he was happy and singing and today was a moody silent one brought on by my asking him to close the garage door.
People do not understand until they have been through this and I am not at the worst part yet.
We have had a great marriage and we have great kids and grandkids.
All I do is second guess my behavior and feel like I am not handling anything correctly.
You are lonely for normal conversation. You are in pain for your spouse. I have a difficult time sleeping and I have reached the point where I don't feel like I can leave him along for even 30 minutes to run to the store.
Anyway, thank you for your entry. I needed to see that others are in the same situation and having many of the same feelings I am having. Thank you again.
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6 Reactions@mm180 T
Those do not seem like small losses to me as my husband is beginning to need more assistance as well. It just seems like a part of my husband disappears each day and it is painful. Thank you for writing so honestly.
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6 Reactions