Hi,
I’m new to the forum, not new to caregiving. I’ve been managing my Mom’s life since October, 2020. I became her full time caregiver August, 2024, when I moved her into my home. She had nearly exhausted her savings. She went on Hospice in late December. Like everyone else here, I know enough about the negatives of caregiving. I’m looking for the positives as my own journey of late has me “unable to see the forest through the trees” most days, and we are obviously dealing with end of life. I really want to focus on as much positive as I can, as Mom will certainly benefit from that energy. Surely there must be some happy endings or less sucky stories out there. I’ll welcome any and all. Thank you.
Hmm...let me see...umm...ahhh...well...ahhh...nothing.
There have been zero positives that have come with my caregiving journey, unless burnout, not having a life, getting few breaks, with funerals being counted as breaks, not being able to travel, being behind all my peers regarding a career, marriage, and having kids, not being able to be out of the house too long, and not being allowed to get extra help for Chicken Little count as positives. And if you tell her to exercise or get PT, prepare to have your tail in between your legs. When she goes, I'll get everything, but my mom opted to have one of her friends be the executrix of her estate instead of me. Either she doesn't want to overload me with estate work or doesn't trust me at all.
When this finally ends, I'll be doing cartwheels from sea to shining sea. The best day of my caregiving journey will be the last day and I'm hoping the last day isn't the day my mom dies. And I'll be telling those who request caregiving-like help from me to get lost and find someone else to help them. They can lean on someone else for slave labor.
After she died, I contacted her visiting physician service to inform them. Her regular nurse-practitioner called me to offer her condolences. She told me that at first, she believed I was probably in way, way over my head, however, she believed the level of care I provided was exemplary, and as good or better than any of her other patients, and I should take some solace and pride in that knowledge. And I did, as it meant a lot to me.
After she died, I figured OK, I'll sleep late and really pig out for a few weeks, and I'll be back to 100% normal in no time, but that was wildly optimistic (which I tend to do sometimes). She passed, I pored through the sixty years of stuff in her house, I sold the old place, I moved elsewhere, and it all took up a lot of time and kept my mind occupied. Then, a few months later, right after the new year, it all really hit me. I woefully underestimated how fried I was, both mentally and physically.
I ended up essentially taking 2019 off. The pandemic came along, and extended that downtime a little more than I would have preferred, but nonetheless, being able to take that time was very fortunate for me, as I was in dire need. It ended up being a fulfilling and rewarding year for me, and in hindsight, I think I really needed it. It wasn't just about recovering from the experience (972 consecutive days is a lot), it was about processing the whole thing, from the unpleasant tasks themselves to finding myself as the last member of my family standing, which all on its own is pretty weird.
One really positive after effect is the experience made everything else seem much less difficult and/or onerous. A busy day at work, or some traffic on the way home, doesn't seem as brutal anymore. I'm serious, too. While I was doing it, I more or less just shut my mind off and forged ahead, but now I look back on a lot of it and think wow, how'd I ever DO that?
Thanks again, wishing each of you all you need, wherever you are on your path. ❤️
I learned that I'm stronger than I thought I was, as well as more devious - I completely lied to my stepdad when I told him that Mum wouldn't be released from hospital until at least 4 daily carer visits were set up, even though that was the recommendation, not set in stone. (Although it's true they wouldn't send Mum home until the care was in place) I knew more than the current morning visit was needed, but he was reluctant to have anyone come in, thinking that his inadequate care was enough.
I came to realise that it's counterproductive to strive for perfection and that we should aim for "good enough" instead, for our sanity and our energy levels. I'm trying to apply this to other areas of my life.
I'm not afraid of dying - I have suffered from suicide ideation since a young age - but I've always been afraid of losing loved ones. Dealing with Mum's death, after years of cognitive impairment and ill health, has given me a different perspective. I don't think that death is a bad thing, now. It's a release.
What's important is doing whatever is possible to give someone a peaceful passing. If that requires strong medication, so be it.
For some reason, I haven't been as plagued by suicidal thoughts since dealing with Mum's ill health and palliative care. Perhaps, on a subconscious level, I appreciate life more. I don't know. But I know that I feel a sense of relief, knowing I did everything I could to ensure that Mum was comfortable at the end (when I was more hands on).
I think that, whenever it's possible, family should not be the main physical caregivers through a long period of ill health or dementia. Life should go on for the family because it's unsustainable to give up one's life to care for another.
It is hard for me to say anything good about that journey for me.
I had to see Lewy's take down my hero, my brother, who was such a good man, always there for me. I always said he was Hansel to my Gretel in every dark wood.
But, in thinking, two positives DO come to me.
1. I learned that he truly WAS heroic. He, who was so into control and simple living, almost monk like, was able to face a future that said he would slowly lose control of everything. He was methodical in getting me in place as POA and Trustee of trust and getting his own small account for his purposes. Methodical in deciding what city to end his days in, whether to attempt to stay in last small home or seek a good ALF that was right for him. And he was able to talk about his journey each step of the way. Said he wasn't glad to know his future but was glad to know the WHY of how differently he saw his workld. He could have TAUGHT A COURSE on Lewy's and its early symptoms. He was honest in wishing he could die before it leveled him (he did) but he faced things with courage, bravery, and his usual ironic sense of humor. He could make me laugh about it being like living in a 60s commune, or that it was like when he was in the army--didn't much like it but made the best of it.
So there was that. It taught me TRUE grace and heroism.
Second thing it taught me is that even pushing 80 I COULD if I had to, learn new things. I had know ZERO about the law, about POA, about Trustee, about sale of real property, about MOST things, and I came here kicking and screams and a paper sack of anxiety. Always anxious, that first year had me FULL with anxiety and panic and fear. But I learned that when I HAD TO DO SOMETHING for a man who I could depend upon all my life, who now needed me, I COULD DO IT. So it taught me a new trust and resilience, I guess.
It's an interesting question, because for days I thought "NOTHING. It taught me NOTHING but how to grieve (and it DID teach me that, as well).
But thinking on your question opened me up really to fully understanding I DID learn.
I will say this as a two time Breast cancer victim/survivor (so far). THAT cancer taught me as well. But as to these lessons? I wish I never had to live long enough to learn them to be honest.
1) Gratitude and pride that I could care for my mother as she wished until the day she died.
2) Since then, realisation that very limited circumstances made it possible for me to do what I did - only 4 weeks, money in the bank, other GM to look after my daughters, an intelligent mother who appreciated all I did. That now gives me even more respect for others who do so much more, for so much longer, with so many more difficulties.
Margaret, remembering my mother, Everett Mary Moore, 1918 - 1997
I appreciate what I learned on my caregiving journey...how to treat various health issues that cropped up, navigating the healthcare system, and advocating for my mom. I find I'm thinking more about my planning documents, wishes for my later years and what constitutes a good vs. poor quality of life. Caregiving for an elderly loved one in your home can be time consuming, exhausting and difficult. In my case I don’t regret for a minute that I took it on.
As far as happy endings …... Sorry , all caregiving has done is make me chronically anxious ( in general) , and afraid that I will get dementia and give my own kids an awful time like my mother did to me and my sister is now doing to my nephew.
If you were or are still able to have any pleasant visits with your mother , or at least your Mom is comfortable , then I guess that could be the positives you are looking for .
My husband is encouraging me to see a shrink and he’s probably right.
Yet it also made me not put up with anyone's bullsh*t, which I guess comes with wisdom, and has allowed me to just call things as I see them, even though that may just come with age.
And I think it's the journey itself that allows us to fine tune our strengths and our weaknesses to grow us into the people we become after caregiving.