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I am the first to tell you this disease sucks.
But I was just wondering if you feel anything good came from having
Hi Michael, thanks for asking.
My parents were very difficult people and my family life was dysfunctional. When I became my mother's caregiver, the difficult relationship continued. But, as her Alz has progressed, our relationship has evolved. She has mellowed and I have grown into a new role. I am grateful for this new relationship. While not perfect, it is so much better than it was for 50 years. And, when she passes, I will hold onto this part of our family history.
My DH has early onset AD. I cannot speak for him.
As a caregiver, I believe I have re-prioritized the things in my life. More specifically, many things I felt were important to me are not important anymore. They are merely "things".
What is important to me now is:
I had to ponder that question for awhile before answering.
It's really tough because my sister was only in her later 50s when she was diagnosed with early onset, and she realized that there were going to be so many things she wasn't going to be able to do in the future. She and I have had some difficult conversations about what's to come. And now, as she slides into early stage 6, seeing the additional confusion and general decline set in, is really hard to take.
But, yeah, I think there were some good things that came of it too.
Michael, thank you for asking this question of us. This thread is incredibly inspiring to me. I would like to ask those of you who have responded if I could reprint your answers in a future Stumped Town Dementia blog post. I would love for those readers to be inspired by your answers too.
If I have your permission, please let me know if you'd like to be credited anonymously, or if I may use your Alzconnected forum name.
Michael, I'll speak for Mom first. I learned how to use the patience which has come to me over the tumultuous 30 years of our autistic son's life. I learned more about Mom's life than I might have otherwise. I learned who I want to be when I grow up (Mom), and get dementia (again, Mom). I have learned an incredible amount from this forum, and better know how I should prepare for the near future (if I'm like Mom, which I very much am, I have until about age 77 or so going on as I am currently at nearly 69. And then the decline will really begin.)
I will speak of my husband's mother now. She never displayed late symptoms of dementia until the last few months of her life, but she died of COPD, old age, and aspiration pneumonia. I was a full member of the 4-woman team who did the care management and the doctor appointments, and the visiting twice a week, and the general "keeping Granny at her home" day-to-day life. I learned better what I already knew-- that I married into the best possible family.
I have met you, Michael, and Iris, and KawKaw. You are all three who else I want to be when I grow up.
Lickety, not sure anything I've said is worth quoting, but go for it with my blessing if you like anything. You may use my first name, Chris.
My sister and I have talked about this often. Our dad was diagnosed with dementia two years ago, and I developed a softer spot for him. He became more gentle, and I became more patient and compassionate. Probably a correlation there! When he couldn't remember a word, and I could fill it in for him, I was his rock star. It made our conversations more interactive, like a fill-in-the-blank quiz. I started to call him every night, and he even wrote in a Christmas card how much those nightly calls meant to him. He has expressed more love and gratitude in the past two years than in all the other years combined.
Another really positive thing is that I've become very close to my sister. She struggled with alcoholism for years, and this year made a commitment to sobriety, which we are all grateful for. She was able to be there for Dad and our family as we took steps to place him in MC. She said that without AA, she would have bagged out at the last minute when it came to being there for Dad and us during the struggles with his sundowning and eventual move and placement. My sis and I have really leaned on each other these past two years, and I'm so grateful for her love and support.
A third positive is that I've been able to express my care preferences to my husband if/when I am diagnosed with dementia.
Thank you for the question, Michael. Lickety, you are welcome to share my comments and use my screen name.
This is some of the good that came from it for me.
There are probably a lot more but I think you get the point.
I am always okay with sharing any information I write. Feel free to
use my full name. As I am already out there.
On anther note I sure hope people don’t think what they share her is
confidential as this is a very public forum and any one as access to it by
doing any type of search. Everyone must assume all of this is public.
zauberflote I don’t
believe I know who you are and how we met. Send me something privet if you want
to recall my memory. I am forgetting so many these days. Thanks
Permission granted to reprint my post and use my Alzconnected forum name.
Michael, first I want to thank yo for being part of this board. I think it is great you can still do what you are doing with having Alzheimer, and I pray you will continue to do as well for a long time.
I am not sure what good can come from this disease since it affects everyone who is in contact with the person that this horrible disease robs the patient and the loved-ones of so much in various ways. I am the sole caregiver of my husband with some help from our daughter. The strange thing about this disease is that it has been harder for me since there is no communication between myself and DH. With this disease, he first had difficulty knowing details, like the time, his birthday, being in the military, and then had Primary Aggressive Aphasia. DH was also a manager for a Fortune 500 company and was a pilot, golfer, boater, etc. When this disease hit him it took away his quality of life to longer be able to golf, building thing (he liked to construct things like decks, etc.) For me the positive part is it has brought myself, daughter and husband closer together because she knows I need her more and since she has been a registered nurse for many years and has worked with Alzheimer patients, has become a person I can turn to from time-to-time and is the voice of reason and calm. She has a full time job and three children, so I do not want to take too much of her time. For myself I also feel I have a different outlook on life and now aware of the struggles many are going through, both caregivers and patients with this disease, and feel that so much more needs to be done in research for the patients since to me this illness is just as serious as Cancer, which my husband also had 14 years ago, and I found I struggled through that with worry, but my DH pulled through it and it was a few years before he was himself again.
So, for some there may be positives - and one is that we may become more patient because if we are not then both patient and caregiver suffers and stress in itself is a killer.
Zauberflote - Not a problem. I just wanted to make sure I did not
forget who you were if I did meet you. I meet so many people and don’t remember
them. Glad to know you here.
For those of you who could not find some good in it I am really
sorry. It may not always easy to see but I do hope this makes you think about
it and just maybe some will come your way. I have always learned in life that no matter
how bad things are some good always come out of that bad. It may just be on how
we think about it.
I'm not sure on what good comes from this illness; I've said this on previous posts on my social media platforms that this is a selfless illness, and to hope for a cure or something to slow down the process. Maybe the only good can come from it is telling stories, or memories, of those affected with the illness; I'm so thankful for my curiosity of a mind to ask my Mother, before she got worse with her diagnosis, would tell me stories from her childhood/adolescence (I said, tell me a funny story from your childhood, I always loved those), and it gives me something to talk about with her, alongside memories that I shared with her that she may still be able to remember. Probably the only good thing is becoming a storyteller.
Have a Happy New Year!