My frustration is off the charts

Dear @grace4u
I have a suggestion that may seem completely unrealistic, but I will share it in case it can lighten the burdens for both you and your husband.

Consider quietly and lovingly Taking Control.

I have been on the Alzheimer's journey with my husband for 16 years so far. They have been wonderful years. My user name, MemoriestoMoments, has two intertwined meanings.

1. It refers to the path that our Persons are on once they have dementia. Although we can do things to stretch out the decline, once on the dementia journey we cannot reverse it. Over time our loved ones will lose most of their Memory and this may well erode capabilities, preclude valued activities, change relationships, upend plans. Over time, they will come to live life as a series of Moments in the present.

2. Though that trajectory is (currently) inevitable, we, their partners, can keep that memory loss from leading to annoyance, sadness, anxiety, incapacity, loss of dignity, and embarrassment, among other negative effects. That is the parallel Memories to Moments process for the partners of people with Dementia:

For our loved ones and for ourselves we can shape a life that:
1. Makes the most of the joys of the “Memoried” life while you can still share with your person,
2. Evolves -- with us increasingly becoming the curators of a series of pleasant Moments for our Person. The result is new joys and deep fulfillment experienced together, and separately, in the present.

I am writing now about how I did this in our life, but here is a summary that may be useful.

The default thinking that many people adopt when Alzheimer’s enters their lives is that their future is going to be dominated by sadness and suffering as the afflicted person’s capabilities inexorably decline.

When I realized my husband had memory issues, I remembered that when my mother was dying of cancer I was able to anticipate what she needed and wanted. In her last weeks, it was as if we were partnering to be her: As she lost agency, I was an able complement. Her death was the most devastating event of my life, but being able to reduce her suffering through that complementarity makes me treasure the memory of those days. Remembering this, I realized that I could do the same thing with my husband as he went through Alzheimer's.

Once you realize that your loved one is having a hard time doing things, you can start experimenting with how to step in (or have others step in) to fill the capacity gaps that emerge. There are two intertwined objectives to this "complementarity" .
• One objective is practical: It is to enable your loved one to achieve outcomes that they want, but can no longer accomplish on their own, or without stress.
• Even more importantly, there is an emotional, psychic objective: It is to minimize, and even eliminate, the stress (and associated anger, anxiety, etc.) of losing capabilities.

The more naturally and tacitly you provide complementary assistance, the more likely you are to reduce stress for the person. Nobody wants to need help. As we know, asking someone with dementia if they want your help, makes it an issue.
Providing the needed help sensitively and proactively, makes it a gift.

As you do this with the intention of wrapping your husband in your solidarity and love, obstacles dissolve. One activity at a time we gently and lovingly redefined independence, replacing it with collaborative effectiveness.

As the disease progressed, I found it important to use "adaptation" as well as complementarity. Complementarity changes Who does what the person wants to do. Adaptation changes What the person does: You accommodate losses of capability by substituting-in doing something similar -- that is within their abilities.

I know that this may seem like a lot. You have your own life to manage, plus the things he used to do for the two of you. Now I seem to be suggesting that you take on his life too. I can only report from my experience that it has made our life joyful and has created great satisfaction and growth for me. I take the chance of sharing this with you because I found that this approach can move those of us facing dementia in our families:
- From victims to agents
- From reactive to proactive
- From fearful to confident

Wishing you the best.

Yes, I would imagine we're all experiencing the same thing - based on the stage they are in. Yesterday for me was the same intense pressure cooker you describe. I'm not sure what we can do other than try to go to bed early, get some needed and "peaceful" sleep, wake up the next day, and go at this again, knowing, but hoping the day will be better. Their confusion is tiring; the worst part is they still hang on to what they know and do, creating more issues. Last night with the cell phone and PC, at our house - not in sync with each other - was exhausting and difficult. I'm not sure how to help other than to say: YOU ARE NOT ALONE. About the best you can do is not engage with him, when he gets angry. If you talk to him, go over to where he is sitting, so he can hear you better. If he needs a ride to the doctor, can you coordinate it with someone ahead of time. So, you get your much needed break, and you don't engage in a dialogue with him about "getting a ride." As for telling you you're making too much out of this, you just have to ignore what he says. Over time, I suppose as the progression gets worse, he won't be saying that. My husband is almost a year into his diagnosis too, and what you're describing is what I'm going through. It's been intense over the last few days, as all of this has become a long, tiring, extended day. I'm sorry for what you're going through; I'm sorry all of us caregivers are up against the fight of this horrible disease.
Best, Karla

@slarson14 I saw your note, and wonder if he's a veteran, does he get additional support - that might apply to my husband?

So difficult to even be around my husband. So mean to me, talks down to me everyday. I try and be patient.Iam at my wits in.

Dear @grace4u
I have a suggestion that may seem completely unrealistic, but I will share it in case it can lighten the burdens for both you and your husband.

Consider quietly and lovingly Taking Control.

I have been on the Alzheimer's journey with my husband for 16 years so far. They have been wonderful years. My user name, MemoriestoMoments, has two intertwined meanings.

1. It refers to the path that our Persons are on once they have dementia. Although we can do things to stretch out the decline, once on the dementia journey we cannot reverse it. Over time our loved ones will lose most of their Memory and this may well erode capabilities, preclude valued activities, change relationships, upend plans. Over time, they will come to live life as a series of Moments in the present.

2. Though that trajectory is (currently) inevitable, we, their partners, can keep that memory loss from leading to annoyance, sadness, anxiety, incapacity, loss of dignity, and embarrassment, among other negative effects. That is the parallel Memories to Moments process for the partners of people with Dementia:

For our loved ones and for ourselves we can shape a life that:
1. Makes the most of the joys of the “Memoried” life while you can still share with your person,
2. Evolves -- with us increasingly becoming the curators of a series of pleasant Moments for our Person. The result is new joys and deep fulfillment experienced together, and separately, in the present.

I am writing now about how I did this in our life, but here is a summary that may be useful.

The default thinking that many people adopt when Alzheimer’s enters their lives is that their future is going to be dominated by sadness and suffering as the afflicted person’s capabilities inexorably decline.

When I realized my husband had memory issues, I remembered that when my mother was dying of cancer I was able to anticipate what she needed and wanted. In her last weeks, it was as if we were partnering to be her: As she lost agency, I was an able complement. Her death was the most devastating event of my life, but being able to reduce her suffering through that complementarity makes me treasure the memory of those days. Remembering this, I realized that I could do the same thing with my husband as he went through Alzheimer's.

Once you realize that your loved one is having a hard time doing things, you can start experimenting with how to step in (or have others step in) to fill the capacity gaps that emerge. There are two intertwined objectives to this "complementarity" .
• One objective is practical: It is to enable your loved one to achieve outcomes that they want, but can no longer accomplish on their own, or without stress.
• Even more importantly, there is an emotional, psychic objective: It is to minimize, and even eliminate, the stress (and associated anger, anxiety, etc.) of losing capabilities.

The more naturally and tacitly you provide complementary assistance, the more likely you are to reduce stress for the person. Nobody wants to need help. As we know, asking someone with dementia if they want your help, makes it an issue.
Providing the needed help sensitively and proactively, makes it a gift.

As you do this with the intention of wrapping your husband in your solidarity and love, obstacles dissolve. One activity at a time we gently and lovingly redefined independence, replacing it with collaborative effectiveness.

As the disease progressed, I found it important to use "adaptation" as well as complementarity. Complementarity changes Who does what the person wants to do. Adaptation changes What the person does: You accommodate losses of capability by substituting-in doing something similar -- that is within their abilities.

I know that this may seem like a lot. You have your own life to manage, plus the things he used to do for the two of you. Now I seem to be suggesting that you take on his life too. I can only report from my experience that it has made our life joyful and has created great satisfaction and growth for me. I take the chance of sharing this with you because I found that this approach can move those of us facing dementia in our families:
- From victims to agents
- From reactive to proactive
- From fearful to confident

Wishing you the best.

@lg2688 i'm so sorry. Perhaps the doctor can give him some to calm him down so he's not so angry. Noone should have to take any abuse, especially when you are doing everything in your power to help him. Talk to his doctor sooner than later, and get him on something that calms him, so he's more even keel with you.
Best, Karla

@memoriestomoments

Thanks for eloquently sharing your experience, and for proposing a positive perspective for life as a caregiver.

Instead of "fighting a battle" with dementia, we can embrace the disease and not be victimized by its destructive path.

Instead of allowing the disease to wreak havoc in our lives, we can follow your banner for improving our coping skills: "Consider quietly and lovingly Taking Control."

Instead of unwittingly making life more stressful and chaotic in our household, we can create a museum of good memories. No one knows who will leave this world first, or when that day will come; so our goal as caregivers is to make each day a good day.

A good day for me would be one during which I convey my love for George through action, words, and the tone of my voice. (No yelling, or even worse, cursing.)

With Gratitude,
George's Wife

@memoriestomoments

Thanks for eloquently sharing your experience, and for proposing a positive perspective for life as a caregiver.

Instead of "fighting a battle" with dementia, we can embrace the disease and not be victimized by its destructive path.

Instead of allowing the disease to wreak havoc in our lives, we can follow your banner for improving our coping skills: "Consider quietly and lovingly Taking Control."

Instead of unwittingly making life more stressful and chaotic in our household, we can create a museum of good memories. No one knows who will leave this world first, or when that day will come; so our goal as caregivers is to make each day a good day.

A good day for me would be one during which I convey my love for George through action, words, and the tone of my voice. (No yelling, or even worse, cursing.)

With Gratitude,
George's Wife

@georgescraftjr

I apologie to anyone whom I have offended by using the terminology "caregiver." I think it's more positive to think of ourselves as partners.

On good days, I tell George that we are partners--albeit he is a "silent partner--traveling
together on what has now become life's path for us. Because of the role model you have set in your eloquent post, I will try to tell him that he is my partner even on not-so-good days. The important thing is that we continue to love each other. "[L]ove's the only engine of survival." LC

Lilly (George's Wife)