Joan, thank you for your comments, and I appreciate your concern. You are absolutely correct that caregivers need support. I do get family support whenever an emergency arises (I have encountered several crises) and on the weekends as they work. Their moral support and love for us have been deeply felt. I am alone 24/7 most of the time. I do participate in two different Alzheimer's Association support groups online once a month with other caregivers. This has helped me overcome various personal emotional crises (44 years of Marriage). They have helped me learn from the experiences of others. I felt I couldn't share my emotions with my kids, as I knew they were also silently grieving for their mother along the way. I was able to “let go of my deep emotions” in these support groups. They have been critical throughout this unknown journey.
I try to take breaks for myself every once in a while as I understand I need to. I have a part-time helper when I do, but I have one problem. I rush back home to be with my wife, as I feel lonely without being with her. She always receives me with a gigantic hug and a kiss. It feels like she's missing me. Maybe she was lonely too? I don't enjoy breaks too much, as I just don't want to lose any minute with her.
Joan, thank you for reaching out to me and “holding my hand.” It has been wonderful meeting you. If I can be of any help in your mission, please don't hesitate to reach out again. I wish you the best and warmest of wishes.
Thank you for this heartfelt reply… I feel your emotion, your awareness of caring for yourself, your effort to balance time for just you/mostly her! 💕Sharing all this is a big care; writing is healing and relieving . Thank you for trusting me with your thoughts. Much love. 🥰❤️🤗🤗
Sammie, how inventive of you! Where there's love there is a way. Thank you for sharing this. I'll share this in the Dementia Anthology, perhaps someone else can use a similar to technique.
Thank you, Victoria. Out of fear of sometimes encountering "that blank look" or "gaze," I find myself inventing different activities along the way to keep my wife engaged and protect her self-identity.
I hear you, Sammie. I'm sorry you have to experience the fear. You're doing an amazing job at engaging her interest and making it a loving experience for her. xo
Your devotion to your wife is so precious. Creating activities to honor her current memory and keep it as intact as possible reflects your care. I see how scared you are should a time come when she doesn’t recognize you ( go to the first comment you received ). So sorry for this.
come when she won’t recognize you. I feel that, too. I would have to hope and trust that my spouse would recognize my touch even though that’s something we can never know. This is such an arduous road. I love what you are doing. Creating activities for your wife with a commitment to minimize frustration and add an element of fun is honoring your love for her. Thank you for being an inspiration.
What an amazing job you are doing as both her husband and caregiver! These are great techniques; plus, you make it fun for her. I can’t imagine the deep well of patience you have to do these things but it is excellent for both you (inventing doable challenges) and for her (working on those challenges and feeling good about herself and you).
As for your high desperation and panic, maybe that’s not so healthy for you. Don’t know that what I’m going yo say will assuage any of that but here goes. Our mom struggled with dementia. She still spoke but she eventually stopped saying my name. She called both my older sister, Maria, and me, by the same name, “Maria.” At first, I wanted to attach a meaning to this (like, Maria was more impt) but then I realized how hard her brain was working to retain even that one loved name. It was clear she loved us both deeply, and that was more impt than any name. Later, she would sometimes confuse our roles. For example, she would think I was her sister. Again, she loved her sister deeply and that was what I focused on — the emotion behind it. Language was failing her but she still held her emotions. The bottom line, she always recognized me as someone she loved deeply. The rest … the name, the name of the role … it just became extra. We were lucky that she always recognized us as peeps who loved her and that she loved. And We let go of the rest.
Each person’s struggle with this disease is, of course, so different. I wish you both only the best, and I wish you peace and continued strength. You are an inspiration.
Thank you very much for your note regarding your mother. Your experiences remind me of similar situations with my wife. You demonstrate how powerful love can be in overcoming many challenges posed by this disease. It was truly inspiring to connect with someone who understands the events that occur on this journey. My best wishes to you and your family.
That is really creative. Not a spouse, but my mother-in-law died from Alzheimer’s. It was a difficult transition to accept that she didn’t know me. (I was going to write “that she didn’t know us” then realized how impersonal that was ). I have dementia and fear the same for myself and the people behind me. I’ll share your story with my caregiver.
Your life now is a bouquet of love. I’ll take some of that love with me. Thank you for your sharing.
Thank you, Judi. You are very brave. I can only say keep interacting with your family as often as possible, which can be key to protecting your self-identity. I wish you the very best life can offer.
How wonderful finding you here, Sammie! I am learning to help my community befriend early onset dementia and love gathering info….more importantly, ideas like yours and the reading prompt game that Barbara does! One thing my community does is hold Memory cafe activities while caregivers have a break or gather with each other to share ideas and experiences. May I ask if you have any respite from your daily care? Your kids helping out, day care events? As you know… we must cater to care givers as well! Take care of yourself and God bless you both! Much love 🥰☺️🤗
Joan, thank you for your comments, and I appreciate your concern. You are absolutely correct that caregivers need support. I do get family support whenever an emergency arises (I have encountered several crises) and on the weekends as they work. Their moral support and love for us have been deeply felt. I am alone 24/7 most of the time. I do participate in two different Alzheimer's Association support groups online once a month with other caregivers. This has helped me overcome various personal emotional crises (44 years of Marriage). They have helped me learn from the experiences of others. I felt I couldn't share my emotions with my kids, as I knew they were also silently grieving for their mother along the way. I was able to “let go of my deep emotions” in these support groups. They have been critical throughout this unknown journey.
I try to take breaks for myself every once in a while as I understand I need to. I have a part-time helper when I do, but I have one problem. I rush back home to be with my wife, as I feel lonely without being with her. She always receives me with a gigantic hug and a kiss. It feels like she's missing me. Maybe she was lonely too? I don't enjoy breaks too much, as I just don't want to lose any minute with her.
Joan, thank you for reaching out to me and “holding my hand.” It has been wonderful meeting you. If I can be of any help in your mission, please don't hesitate to reach out again. I wish you the best and warmest of wishes.
Thank you for this heartfelt reply… I feel your emotion, your awareness of caring for yourself, your effort to balance time for just you/mostly her! 💕Sharing all this is a big care; writing is healing and relieving . Thank you for trusting me with your thoughts. Much love. 🥰❤️🤗🤗
Sammie, how inventive of you! Where there's love there is a way. Thank you for sharing this. I'll share this in the Dementia Anthology, perhaps someone else can use a similar to technique.
Thank you, Victoria. Out of fear of sometimes encountering "that blank look" or "gaze," I find myself inventing different activities along the way to keep my wife engaged and protect her self-identity.
I hear you, Sammie. I'm sorry you have to experience the fear. You're doing an amazing job at engaging her interest and making it a loving experience for her. xo
Sammie,
Your devotion to your wife is so precious. Creating activities to honor her current memory and keep it as intact as possible reflects your care. I see how scared you are should a time come when she doesn’t recognize you ( go to the first comment you received ). So sorry for this.
come when she won’t recognize you. I feel that, too. I would have to hope and trust that my spouse would recognize my touch even though that’s something we can never know. This is such an arduous road. I love what you are doing. Creating activities for your wife with a commitment to minimize frustration and add an element of fun is honoring your love for her. Thank you for being an inspiration.
Thank you, Tina. I am sure your spouse will recognize your touch. Love is powerful and communicates in different ways.
What an amazing job you are doing as both her husband and caregiver! These are great techniques; plus, you make it fun for her. I can’t imagine the deep well of patience you have to do these things but it is excellent for both you (inventing doable challenges) and for her (working on those challenges and feeling good about herself and you).
As for your high desperation and panic, maybe that’s not so healthy for you. Don’t know that what I’m going yo say will assuage any of that but here goes. Our mom struggled with dementia. She still spoke but she eventually stopped saying my name. She called both my older sister, Maria, and me, by the same name, “Maria.” At first, I wanted to attach a meaning to this (like, Maria was more impt) but then I realized how hard her brain was working to retain even that one loved name. It was clear she loved us both deeply, and that was more impt than any name. Later, she would sometimes confuse our roles. For example, she would think I was her sister. Again, she loved her sister deeply and that was what I focused on — the emotion behind it. Language was failing her but she still held her emotions. The bottom line, she always recognized me as someone she loved deeply. The rest … the name, the name of the role … it just became extra. We were lucky that she always recognized us as peeps who loved her and that she loved. And We let go of the rest.
Each person’s struggle with this disease is, of course, so different. I wish you both only the best, and I wish you peace and continued strength. You are an inspiration.
Thank you very much for your note regarding your mother. Your experiences remind me of similar situations with my wife. You demonstrate how powerful love can be in overcoming many challenges posed by this disease. It was truly inspiring to connect with someone who understands the events that occur on this journey. My best wishes to you and your family.
That is really creative. Not a spouse, but my mother-in-law died from Alzheimer’s. It was a difficult transition to accept that she didn’t know me. (I was going to write “that she didn’t know us” then realized how impersonal that was ). I have dementia and fear the same for myself and the people behind me. I’ll share your story with my caregiver.
Your life now is a bouquet of love. I’ll take some of that love with me. Thank you for your sharing.
Thank you, Judi. You are very brave. I can only say keep interacting with your family as often as possible, which can be key to protecting your self-identity. I wish you the very best life can offer.
Oh no! Only a part of my comment registered here. Dang!
Bless your heart! You are modeling a way we can adopt as we may/will need in our lives to help our families!
Celebrating with you for such significant moments!
How wonderful finding you here, Sammie! I am learning to help my community befriend early onset dementia and love gathering info….more importantly, ideas like yours and the reading prompt game that Barbara does! One thing my community does is hold Memory cafe activities while caregivers have a break or gather with each other to share ideas and experiences. May I ask if you have any respite from your daily care? Your kids helping out, day care events? As you know… we must cater to care givers as well! Take care of yourself and God bless you both! Much love 🥰☺️🤗