I'm New and Looking Forward to Meeting and Sharing With You.

DebrahS1 · September 18

Hello everyone.

I am new to this group and board and have decided to become, I hope, a part of your community because I have been dealing with the Parkinson’s dementia of my Life Partner (my LO = Loved One) now for several years.

I’ve thought for quite a long time that I would love to be able to attend a Caregiver’s support group and be able to trade experiences, but I’ve found that actually attending an “in person” support group isn’t practical for me.

I have days where I have home care come in for LO – but I find those days filled with catching up on errands, shopping, Dr. appointments for myself - and just trying to find some respite time for myself doesn’t really leave room for a regular, in person support group on my schedule.

So, I’ve come here, to this virtual support group hoping for community, experience, sharing and the joy of meeting new people who understand me and the world I now live in each day.

I am 68 my LO is 77. She was diagnosed with Parkinson’s 15 or 16 years ago. I noticed the start of her cognitive decline probably 6 years ago. She received a diagnosis of Parkinson’s Dementia 3 years ago.

I retired from my career (which I loved) in January of this year to care for her 24/7 as it was clear that it was no longer safe for her to be home alone any longer.

I had a very exiting but stressful career in emergency management – but being a Caregiver is by far the hardest, most stressful work I have ever done.

My LO’s cognitive decline has been steady over the past couple of years and hard to constantly adapt to. But 3 months ago she suffered a stroke, and while she is doing remarkably well for the degree of the stroke and is home with me again, it’s clear that it has sped up her cognitive decline.

So I decided that it was important for me, at this point in time, to reach out, ask for help (which is hard for me!) and work to develop a network of support. I hope not only to find that here for myself but to also be that for others.

Thanks for having me and I look forward to meeting many of you in the days and weeks to come.

Debrah

Ed's mom · September 18

Welcome Deborah, yesterday someone called this"the club we never wanted to join", isn't that the truth. My LO is 75, I too am new here , I don't know how long you get to say that. My life day to day is pretty miserable, she's in the "arguing about arguing" stage, so I have learned many things here that have really helped. Be honest, ask your questions because someone here has an answer, this is such a great knowledgeable group. I'm in Maine if that helps imagine an in person group.

sfrsythe · September 18

Hi Debrah: welcome to the group that I learn so much from. I don’t want to be here either but it’s better to accept and learn than try to avoid it. I’m around the Boston area. Again, welcome.

lizfourgod · September 18

welcome Deborah- I’m new here too and I read but never comment time to start and get involved :)

wose · September 18

Hi Debrah !!! So sorry you have to be here but welcome. I’m in southwestern PA and my DH is 77 and I’m 68, like you. The warriors on this site have helped me so much and really it’s my only source of human connection. I am so grateful. You’ve had quite a journey so far, so I’m glad you found us. Like Ed’s mom, I too am completely miserable and sad and lonely….but I forge on with the help of this site. All questions and comments are on the table💕💙

Biggles · September 19

Welcome to the group that was my lifesaver, lack of support, friends that found it too confronting, not knowing who to turn to or what to expect next. Then I found this group. Come here often it’s amazing.

Goodlife2025 · September 19

Welcome Debrah, such a diverse group we are but sharing this lifeline is my only outlet as well. Lots of great information, emotional and spiritual supports, and you just never know what we might be talking about on any given day.😀 Representing the only person on here I know of living in western Colorado. I am 64, retired early as well, and my DW is just 50 with EOAD.

DebrahS1 · September 19

https://alzconnected.org/discussion/comment/282550#Comment_282550

Thank you Ed's Mom, it's good to meet you too. Yes, I am very familiar with the "arguing about arguing stage" as my LO is in that place off and on throughout the day but definitely wakes up a couple of times in the night, every night right now, in that place. It's hard enough dealing with it (I say something is black, she will insist it is white. I say something is white and she will insist it is black!) during the day but at night, when I am already so sleep deprived I have to admit it is the thing that pushes me to my borders of patience. Thank you for your welcome and I look forward to talking with you in the future.

DebrahS1 · September 19

Hi back to you sfrsythe, and thank you for the welcome. Love Boston! I am in Colorado and have lived here for over 36 years but in nearly all of my work over the many years I traveled widely and I always loved a chance to visit Boston. I look forward to talking with you more.

DebrahS1 · September 19

Hi Lizfourgod, Thank you for the welcome! And if you decided to get reengaged I'll look forward to talking with you more. Thanks for taking the time to reply to my introduction, I appreciated it.

DebrahS1 · September 19

Thank you Wose, it's good to have your welcome. I am so sorry for your sadness and loneliness. I understand it all too well as well as the need for human connection. It's so easy to get isolated when you are walking in the shoes of the Caregiver isn't it? I have to try harder, I think, to figure out ways to reduce that isolation, both for myself as well as my LO. And for myself, this group is my start and I look forward to talking with you more in the days ahead. Take care of yourself, it's so important that you do.

DebrahS1 · September 19

Hi Biggles, thank you for the kind welcome. Yes, I hear you about all the reasons you came to this group - it's so much my story too. My LO and I have a very small group of good friends who have stuck with us through all of this but I find that even those good folks interact with us less and less - and mainly because they have health problems of their own to deal with. And both my closest family and my LO's closest family are all out of state from where we are - so there are no relatives to help me in my care for her. I knew when I retired how much I counted on my co-workers as my "family" group and they also hung in with me for about a year after my retirement as I continued to do volunteer work for them - but it's a year later and they of course have moved on with their personal and work lives and I'm not there to move with them. . . so that attachment is thin also. That's why I'm so glad to come join this group and I look forward to trying my best to not only look for new friends but to be a good new friend to the good folk here. Thanks again and I look forward to talking with you more.

DebrahS1 · September 19

Good morning Goodlife2025, and hello to you - I'm also in Colorado, although on the opposite side of the mountains from you. Thank you for the kind welcoming words.

I'm glad to hear that you've found a diverse support group here and look forward to meeting all of you. I'm also glad to hear that you find the group to spiritually as well as emotionally supportive as those aspects are very important to me as well. I hope you have a good weekend and I look forward to chatting with more more in the days ahead.

blacksparky · September 19

https://alzconnected.org/discussion/comment/282550#Comment_282550

I would say that we can say we’re new to this as long as we can. Seems like everyday something happened to our situation that was new to me. Every day is a new day and new problems that I’ve had to reach out to the group for advice.

misteelynn · September 19

https://alzconnected.org/discussion/77135/im-new-and-looking-forward-to-meeting-and-sharing-with-you

Hi Debrah,

I'm new to the group also. My heart goes out to you and the other on this site. Cognitive decline is so heartbreaking and stressful. My mother just passed away in July from ALZ or dementia (I was never quite clear what her diagnosis was). I'm so glad your LO is doing reasonably well since her stroke but so sorry her decline progressed. From the posts I have read in this group, I think we both have found some much needed support. I also want to be of help and support to others as well as receiving help and support for myself.

Misteelynn

Bacciammo · September 20

https://alzconnected.org/discussion/77135/im-new-and-looking-forward-to-meeting-and-sharing-with-you

hi Deborah, I’m 58 and my DH is 68. He was diagnosed 2.5 yrs ago with mild cognitive impairment. It’s gotten a lot worse and we are going for more evaluations. I still work but it is a struggle. I work from home via computer and DH interrupts my meetings most days with some “important” random thing to tell me. My days are like this—He lets the dog out to run down the street, forgets he left the hose on, forgets he’s letting out too much water from the pool, forgets and leaves the grill on, etc. , insists on driving still and gets lost—and he insists he does not have cognitive impairment. He will not wear his CPAP although it was diagnosed as the reason for his memory loss. I joined the group also to connect with folks. It’s truly hard to go through all of this and I’m finding that no one understands it like another spouse who is living through this. A few of my friends who have had loved ones with dementia before understand and are encouraging and kind, but the others who don’t understand the disease have kept their distance or act weird. You are in a safe space here where you can truly express yourself and find kind and encouraging words. If you have a bad day, feel free to vent also. We all have them. Some days are harder than others. Gods grace and mercy and helpful posts at this site keep me from feeling too alone.

SDianeL · September 20

https://alzconnected.org/discussion/comment/282664#Comment_282664

Has anyone mentioned the term:

Anosognosia which is a neurological condition where a person is physically unable to perceive or recognize their own mental or physical illness.

What It Is and Why It HappensThe word comes from Greek roots meaning "to not know a disease". It is not a psychological choice or stubborn denial. Instead, physical damage to the brain stops the person from processing information about their own health.According to the Cleveland Clinic, the condition usually stems from damage to the frontal and parietal lobes—the areas of the brain responsible for self-awareness and self-reflection. You can read more about the clinical definition on Wikipedia

SDianeL · September 20

Welcome to the place for info and support or just to vent. After my husband's diagnosis I was terrified & lost until I found this group of wonderful caregivers. I'm not new to this group. My husband passed from Alzheimer's in August 2024 and I still come here to try to help other caregivers just starting on this journey or to check to see how others are doing. I do that in his memory. I also donate to the Alzheimer's Association when I can. Learn all you can about the disease so you can help your LO. I live in Florida.

I'm New and Looking Forward to Meeting and Sharing With You.

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