I can't even imagine what you must have gone through, Janice. The thoughts, the feelings, the sheer will to carry on--there's so much bravery there. You may not have felt brave at the time, but I'm glad to see you're giving yourself credit for doing what you had to do, for loving Dan for being who he was and not for what he had become.
Caregiving is such a thankless job. All you can do is boost yourself up and go at it day by day.
Peace now, my friend. This is your time. Allow yourself to enjoy it. ❤
Hi Ramona, Thank you ever so much for your comments. So true, it took sheer will many days - and as you and I have said - the deep love we had for our husbands. I would make the same choice again, but be much better prepared in many ways.
💜💜💜 I am a caregiver woman to a woman, who is three years older than I am. This is my third year. She has Alzheimer’s, dementia, and Louis body dementia. Some days are really good and humorous. & other day is really sad and makes me cry. It is a horrible disease. She has lived with it for 10 years now. I see how her family is with her, so loving so caring, but it’s starting to be a toll on them too. Thanks for sharing. I resonated with your story. And thanks for putting it out there. Hugs my friend. Blessings to you. You will survive.
I think that the best thing you show your readers, Janice, is that grief is long and it is releentless. And the trauma of trying to care for a loved one for a long period of time is deep and often incapacitating. I feel for you, my friend and I can see you are slowly working your way through it by helping others and by challenging yourself. Good for you!
Hi Sharron, Thank you. That's the plan - I couldn't think of any other way to go. People talk about releasing grief, I don't see it going anywhere soon and think we may just need to learn to live with it.
I am curious Janice, when Dan went into care did you have any sense of relief that you didn't have to be fully responsible for him? It sounds like it was such a blurry, hard time of role adjustments that perhaps relief wasn't in your consciousness.
I think I live in a fantasy world that if I was in this situation I would be ok to be alone so I appreciate you keeping it real and giving me so much to consider.
Hi Donna, Yes and no. It's interesting you ask because I am writing an article now about the memory care nightmare - and it brought back all the memories.
Yes, because he was safe, he wasn't going to run away or burn the place down. I think they took good care of him and he had become nasty, so that was a challenge I no longer had to manage.
He was admitted during the pandemic, which created a series of problems.
No, because my needs, as the caregiver/loved one were not. I wanted to talk to him daily, to receive at least weekly reports, and for him to be safe. Ultimately, all kinds of promises were made and never kept - and he died of COVID which he got there.
Actually, I like being alone and am managing well enough in that regard. But I miss Dan - he was the boy down the street, we grew up together, our parents were friends. We were married for over 60 years. Now there is no one to fill that hole or to share those memories with. Thank you for asking and take care.
I became a caregiver for my mother when I was in my late teens/early 20s when she got sick. I then became her guardian. I had no idea what I was doing at the time. There were few resources on caregiver stress and I find little has changed 20 years later. I think it's vitally important that clinicians and facilities focus far more on the caregiver than they currently do. Good for you for talking about this issue.
I certainly agree with you. It was the hardest job I every had and there was very little valid support for those providing the care. You were so young to take on such a challenge.
(I originally replied in the wrong spot. I moved it to the right spot!)
And there is still very little support. It's hard to believe given all the information we have now about caregiver stress.
Yes, I was very young and the experience took a huge toll on me for a very long time. Fortunately I worked through much of that experience before my kids were born. Though there are days where I can still get "triggered" by my experience.
I think you're doing really important work here on your substack. Looking forward to reading more. Thank you!
Hi, I so agree with your point about so little support for caregivers. There are a lot of platitudes and quick fixes but, as you found, it is a life-altering event - in so many ways. Thank you for your encouragement and take care.
I can't even imagine what you must have gone through, Janice. The thoughts, the feelings, the sheer will to carry on--there's so much bravery there. You may not have felt brave at the time, but I'm glad to see you're giving yourself credit for doing what you had to do, for loving Dan for being who he was and not for what he had become.
Caregiving is such a thankless job. All you can do is boost yourself up and go at it day by day.
Peace now, my friend. This is your time. Allow yourself to enjoy it. ❤
Hi Ramona, Thank you ever so much for your comments. So true, it took sheer will many days - and as you and I have said - the deep love we had for our husbands. I would make the same choice again, but be much better prepared in many ways.
💜💜💜 I am a caregiver woman to a woman, who is three years older than I am. This is my third year. She has Alzheimer’s, dementia, and Louis body dementia. Some days are really good and humorous. & other day is really sad and makes me cry. It is a horrible disease. She has lived with it for 10 years now. I see how her family is with her, so loving so caring, but it’s starting to be a toll on them too. Thanks for sharing. I resonated with your story. And thanks for putting it out there. Hugs my friend. Blessings to you. You will survive.
I think that the best thing you show your readers, Janice, is that grief is long and it is releentless. And the trauma of trying to care for a loved one for a long period of time is deep and often incapacitating. I feel for you, my friend and I can see you are slowly working your way through it by helping others and by challenging yourself. Good for you!
Hi Sharron, Thank you. That's the plan - I couldn't think of any other way to go. People talk about releasing grief, I don't see it going anywhere soon and think we may just need to learn to live with it.
Yes. Grief, IF it lessens over time, is most likely a result of learning to live with it. As you say.
I am curious Janice, when Dan went into care did you have any sense of relief that you didn't have to be fully responsible for him? It sounds like it was such a blurry, hard time of role adjustments that perhaps relief wasn't in your consciousness.
I think I live in a fantasy world that if I was in this situation I would be ok to be alone so I appreciate you keeping it real and giving me so much to consider.
Hi Donna, Yes and no. It's interesting you ask because I am writing an article now about the memory care nightmare - and it brought back all the memories.
Yes, because he was safe, he wasn't going to run away or burn the place down. I think they took good care of him and he had become nasty, so that was a challenge I no longer had to manage.
He was admitted during the pandemic, which created a series of problems.
No, because my needs, as the caregiver/loved one were not. I wanted to talk to him daily, to receive at least weekly reports, and for him to be safe. Ultimately, all kinds of promises were made and never kept - and he died of COVID which he got there.
Actually, I like being alone and am managing well enough in that regard. But I miss Dan - he was the boy down the street, we grew up together, our parents were friends. We were married for over 60 years. Now there is no one to fill that hole or to share those memories with. Thank you for asking and take care.
I became a caregiver for my mother when I was in my late teens/early 20s when she got sick. I then became her guardian. I had no idea what I was doing at the time. There were few resources on caregiver stress and I find little has changed 20 years later. I think it's vitally important that clinicians and facilities focus far more on the caregiver than they currently do. Good for you for talking about this issue.
I certainly agree with you. It was the hardest job I every had and there was very little valid support for those providing the care. You were so young to take on such a challenge.
(I originally replied in the wrong spot. I moved it to the right spot!)
And there is still very little support. It's hard to believe given all the information we have now about caregiver stress.
Yes, I was very young and the experience took a huge toll on me for a very long time. Fortunately I worked through much of that experience before my kids were born. Though there are days where I can still get "triggered" by my experience.
I think you're doing really important work here on your substack. Looking forward to reading more. Thank you!
Hi, I so agree with your point about so little support for caregivers. There are a lot of platitudes and quick fixes but, as you found, it is a life-altering event - in so many ways. Thank you for your encouragement and take care.