Longtime caregiver looking for support and coping tips

Good Morning Merry,
Thanks for your message. I don't think I'm allowed to post links on this website. However, if people go to Amazon, click on books, and enter Harriet Hodgson, author, they can find the caregiver series and other books. My 45th book is in production now.

I just placed my order!

Thanks a bunch!

Hi Harriet! Nice to see your post. My husband has just been diagnosed with Vascular Dementia and it has been progressing so fast it's dizzying. Next Wed. we go to specialists for his first neuro assessment.

Would you mind posting links to your books once more? This will help so many of us starting out on this horrendous loving journey.

Thank
Merry

Scott,

I admire your strength and positive attitude. I’m caregiver to my husband, who was diagnosed with bladder cancer in August 2021. Although it’s been only a few months since the diagnosis, I have been feeling so mentally and physically exhausted and overwhelmed. I’m hesitant to share my feelings with my close friends because I don’t believe anyone else needs this type of negativity. I pretend I’m fine if and when I have a chance to get together with them. But I’m really not okay.
My biggest issue was when he lashes out on me because of his stress and fear of cancer returning, as well as because he suffers from the side effects of treatments. I tried and tried not to take any of these personally, but it is very difficult at times simply because I did not do anything wrong and I have my own feelings too. I do put myself in his own shoes but I still find it hard to absorb at times.
How did you cope and overcome all of the above? I’m at a point where I don’t even want to socialize with my close circle of friends because I don’t want to pretend all is fine with me, yet I really don’t want to let my negative emotions out because I’m afraid my experience will not do them any good.

Thank you for listening.
JW

Hi JW,
I hear you about the stress caused by your husband lashing out. My husband has had blood cancer, a serious lung infection and a stroke. He was in fairly good shape until the stroke and then because of the location in the brain that the stroke affected he became very morose and angry. Because I am the only person he sees it all lands on me and I think I understand exactly how you feel about telling friends what is really happening. I don't want to load them with my troubles. I tried to explain his behavior to my daughters but they don't want to or can't hear. It made me feel very alone which is one reason I decided to join this support group. I am struggling too and feeling inadequate because I can't figure it out, so what I do is just remind myself that I am okay right now! in the moment, and I'll let the next moment take care of itself. I pray--for all of us who find ourselves in frightening and exhausting situations. I remember that one foundational truth of life is that everything changes, and often for the better. I am grateful for every morning, for beauty and kindness wherever I find it. Hang in there and I will be hanging there with you 🙂

I am managing pretty well. I am a social worker and a psychologist so I am well acquainted with what services exist in my community, and how to access. When my father was not responding well to treatment the oncologist had their social worker call me and I was astounded at how little she knew. I am better equipped to manage this stress than most lay people.

Good Morning Merry,
Thanks for your message. I don't think I'm allowed to post links on this website. However, if people go to Amazon, click on books, and enter Harriet Hodgson, author, they can find the caregiver series and other books. My 45th book is in production now.

I am a speech/language pathologist that spent years working with patients with dementia, strokes, brain injuries. I taught staff and family how to best communicate with the patients, how to set up the environment for successful interactions, strategies for interaction.
But my father had several small strokes, and then some form of dementia or mental problems that I had never encountered. Hoarding, delusions, strange behaviors, striking out at others started. It is so different when it is your own parent than when you are in a professional role. Just being able to vent and cry and talk about the craziness to a good listener is good for the soul. We also had to get guardianship and put him in a locked ward of a nursing home which was the most horrible thing to have to do. Dad was oriented, could answer all the questions on their nursing form. But he would show up at a family Christmas Eve party with a machete tucked in his belt. He was reusing adult disposable diapers, eating rotten food, showing up at the hospital for a heart transplant (at 90 years old).
I guess I am trying to say we can have the knowledge, the skills, the empathy, but when it is a parent all bets are off.
And also, we think we can handle more than others and set ourselves up to accomplish impossible tasks. There is a lot of guilt about saying “I can’t do this and I have to place this person in another setting.”

I am a speech/language pathologist that spent years working with patients with dementia, strokes, brain injuries. I taught staff and family how to best communicate with the patients, how to set up the environment for successful interactions, strategies for interaction.
But my father had several small strokes, and then some form of dementia or mental problems that I had never encountered. Hoarding, delusions, strange behaviors, striking out at others started. It is so different when it is your own parent than when you are in a professional role. Just being able to vent and cry and talk about the craziness to a good listener is good for the soul. We also had to get guardianship and put him in a locked ward of a nursing home which was the most horrible thing to have to do. Dad was oriented, could answer all the questions on their nursing form. But he would show up at a family Christmas Eve party with a machete tucked in his belt. He was reusing adult disposable diapers, eating rotten food, showing up at the hospital for a heart transplant (at 90 years old).
I guess I am trying to say we can have the knowledge, the skills, the empathy, but when it is a parent all bets are off.
And also, we think we can handle more than others and set ourselves up to accomplish impossible tasks. There is a lot of guilt about saying “I can’t do this and I have to place this person in another setting.”