As my mother's dementia worsened, my quality of life declined along with hers. For a long time I couldn't see what it was costing me, and I know I'm not alone.
It is so hard. My siblings and I cared for our dad in his last six weeks of life (hospice care for the last few), and it was almost too much for us. Thank you for sharing your story and all the resources here.
Amy, what a powerful essay you have written in honor of yourself as the caregiver of a parent with dememtia, and of everyone in this country who provides caregiving to a loved one without structural support. The reality is just too damn hard! I applaud you for unapologetically acknowledging how hard this work is, calling a spade a spade. I think the psychological conditioning of being a "good daughter" adds an extra layer to this Herculean responsibility. When we feel attached to this cherished image of ourselves--which I myself have done all my life until just recently--the emotional burden can be suffocating, because, who are we if were weren't good daughters all the way? Our very notion of being a fundamentally good person would be threatened! And I support you 100% in saying: "This is hard. It’s okay to say it’s too hard. It’s okay to look for other options than having our loved ones live with us, if living with us means we are falling apart."
In addition to your courageous sharing of your how you feel about caregiving, your list of resources and songs add so much to this well researched article. I believe anyone struggling with caring for an elderly parent with dementia will find it extremely helpful.
Amy, I forgot to tell you about Tam Cummings. Amazing woman who has written about dementia and Alzheimer’s disease. She had webinars that were so insightful and gave me the courage to feel sad for myself, but also to pick up the pieces and move on.
Is there anything more that your siblings could have done to help? I’m in a position where only one sibling is in the same geographical location as my mom and almost all of this will fall to her. I’ve taken over most of the finances as that’s something I can do remotely. What else can I do to help?
Dacy, thank you for this thoughtful comment. Your sibling is already having a huge load off her shoulders with you handling finances. Your sibling will appreciate hearing from you often, even just lending a sympathetic listening ear and hearing, "I know this is hard. I appreciate so much what you're doing for mom. Let me know what else I can do to help." Because I held myself back for too long for letting my siblings know how hard this was, I didn't realize how much love and support was available to me. I let a tendency toward martyrdom lead me instead, until I learned to be brave and vulnerable. So I think just creating the space for your sibling to be vulnerable and honest with you helps. I also think the sibling who is the main caregiver needs to get a week or so completely "off duty," to ensure they can get away. It isn't clear if your mom would live with this sib or in her own home with assistance or a care home--but if it is possible, offering to be where your sib is and take over responsibility for mom at least once a year so your sib can get away, will also make a huge difference. I've also given my sibs research assignments along the lines of "please research this possible benefit for mom," or "can you call up potential care homes and find out the details?" So I'd offer to do anything research related so the sib can focus on your mom. I hope this helps! You are clearly a kind and thoughtful sister.
This helps SO much! Yes, my sister is similar in that I know she won't be able to ask for help, so I know I'll need to push help and breaks on her. At the moment my mom is still at home with my dad, who's not well equipped to be her caregiver, and they're about to move into a house next door to my sister. As you know, it's hard to determine a timeline for when she'll need something else. I just have one other question - my mom is in denial that there's anything wrong (there's no question about her condition) and gets very upset and defensive if anyone mentions anything about needing help, so it's going to be impossible to talk to her about what her wishes will be when the time comes for a change in care. Did you experience anything like this?
My mother was anxious in the mild cognitive impairment phase, aware that she was having significant memory losses and unhappy about it, but she did not get very upset or defensive. She acknowledged the problem, which of course made it easier for me and my siblings and as time went on and her symptoms grew more advanced, she still understood and accepted why there had to be further steps taken to ensure she was safe and well taken care of. Losing one's autonomy, especially cognitively, is not an easy thing for anyone and I imagine I will rail against it too when the time comes. I would look into some of the resources I mentioned in my newsletter, like Dementia Careblazers, a geropsychologist with hundreds of free You Tube videos that no doubt touch on this topic. Most communities in the U.S. also have support groups for families typically through the Alzheimer's Association. Perhaps what seems impossible now in terms of a conversation with your mom simply needs time for her to adjust to her new reality and limitations, and then she might be more open to talking about it. My mom is 86, and of a generation that tends to heed whatever their doctor recommends, so if your mother puts a lot of value in her doctor she might have an easier time hearing about this in that setting. I don't have the expertise to offer you, just a lot of compassion for your situation.
It is so hard. My siblings and I cared for our dad in his last six weeks of life (hospice care for the last few), and it was almost too much for us. Thank you for sharing your story and all the resources here.
Amy, what a powerful essay you have written in honor of yourself as the caregiver of a parent with dememtia, and of everyone in this country who provides caregiving to a loved one without structural support. The reality is just too damn hard! I applaud you for unapologetically acknowledging how hard this work is, calling a spade a spade. I think the psychological conditioning of being a "good daughter" adds an extra layer to this Herculean responsibility. When we feel attached to this cherished image of ourselves--which I myself have done all my life until just recently--the emotional burden can be suffocating, because, who are we if were weren't good daughters all the way? Our very notion of being a fundamentally good person would be threatened! And I support you 100% in saying: "This is hard. It’s okay to say it’s too hard. It’s okay to look for other options than having our loved ones live with us, if living with us means we are falling apart."
In addition to your courageous sharing of your how you feel about caregiving, your list of resources and songs add so much to this well researched article. I believe anyone struggling with caring for an elderly parent with dementia will find it extremely helpful.
Amy, I forgot to tell you about Tam Cummings. Amazing woman who has written about dementia and Alzheimer’s disease. She had webinars that were so insightful and gave me the courage to feel sad for myself, but also to pick up the pieces and move on.
https://www.tamcummings.com/
Nancy, so grateful for this connection. Thank you. I will check out her website and reach out to her.
Is there anything more that your siblings could have done to help? I’m in a position where only one sibling is in the same geographical location as my mom and almost all of this will fall to her. I’ve taken over most of the finances as that’s something I can do remotely. What else can I do to help?
Dacy, thank you for this thoughtful comment. Your sibling is already having a huge load off her shoulders with you handling finances. Your sibling will appreciate hearing from you often, even just lending a sympathetic listening ear and hearing, "I know this is hard. I appreciate so much what you're doing for mom. Let me know what else I can do to help." Because I held myself back for too long for letting my siblings know how hard this was, I didn't realize how much love and support was available to me. I let a tendency toward martyrdom lead me instead, until I learned to be brave and vulnerable. So I think just creating the space for your sibling to be vulnerable and honest with you helps. I also think the sibling who is the main caregiver needs to get a week or so completely "off duty," to ensure they can get away. It isn't clear if your mom would live with this sib or in her own home with assistance or a care home--but if it is possible, offering to be where your sib is and take over responsibility for mom at least once a year so your sib can get away, will also make a huge difference. I've also given my sibs research assignments along the lines of "please research this possible benefit for mom," or "can you call up potential care homes and find out the details?" So I'd offer to do anything research related so the sib can focus on your mom. I hope this helps! You are clearly a kind and thoughtful sister.
This helps SO much! Yes, my sister is similar in that I know she won't be able to ask for help, so I know I'll need to push help and breaks on her. At the moment my mom is still at home with my dad, who's not well equipped to be her caregiver, and they're about to move into a house next door to my sister. As you know, it's hard to determine a timeline for when she'll need something else. I just have one other question - my mom is in denial that there's anything wrong (there's no question about her condition) and gets very upset and defensive if anyone mentions anything about needing help, so it's going to be impossible to talk to her about what her wishes will be when the time comes for a change in care. Did you experience anything like this?
My mother was anxious in the mild cognitive impairment phase, aware that she was having significant memory losses and unhappy about it, but she did not get very upset or defensive. She acknowledged the problem, which of course made it easier for me and my siblings and as time went on and her symptoms grew more advanced, she still understood and accepted why there had to be further steps taken to ensure she was safe and well taken care of. Losing one's autonomy, especially cognitively, is not an easy thing for anyone and I imagine I will rail against it too when the time comes. I would look into some of the resources I mentioned in my newsletter, like Dementia Careblazers, a geropsychologist with hundreds of free You Tube videos that no doubt touch on this topic. Most communities in the U.S. also have support groups for families typically through the Alzheimer's Association. Perhaps what seems impossible now in terms of a conversation with your mom simply needs time for her to adjust to her new reality and limitations, and then she might be more open to talking about it. My mom is 86, and of a generation that tends to heed whatever their doctor recommends, so if your mother puts a lot of value in her doctor she might have an easier time hearing about this in that setting. I don't have the expertise to offer you, just a lot of compassion for your situation.
Thank you so much.