Pat's Gameplan

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Welcome to the Caregiver Forum!

This is the place to connect with others who are on the same caregiver journey as you. Here, you can share your experiences, find support, or just chat with others who truly understand the hardship and, yes, even the occasional joy of being a caregiver.

This community is here to provide you with the emotional support and practical advice you need. Feel free to ask questions, share your stories, and offer advice based on your own experiences.

Remember, you are not alone on this journey. Our forum is a safe space for you to express your feelings, seek advice, and connect with others who are facing similar challenges. Together, we can build a supportive and understanding community where every caregiver feels heard and valued.

Join the conversation today and become part of a community that cares for caregivers!

Posted by: Pat's Gameplan on May 13th, 2024

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Sarah Mitchell 3 months ago

Happy to be here! Love the Share My Story videos the most!

Lisa Johnson 3 months ago

Thank you for creating such a great place for us to connect!

Claude Turner 3 months ago

Grateful to be here. I am the newest caregiver for my brother Ronald. I never dreamed this would happen. But every single day is a new adventure. Looking forward to connecting!

Pavel Lesh 1 month ago

This site has so much value! Thanks Pat Summitt Team for what you have done!

Cassie Deaner 1 month ago

This site, and sites like it are sooooooo needed!

Hi, I'm Emily and my father was diagnosed with Alzheimer's just a few months ago.

Hello everyone, my name is Emily, and I am honored to be part of this community, my father was diagnosed with Alzheimer's just six months ago, and these past months have been a whirlwind of emotions and challenges. From the initial shock and denial to the gradual acceptance and adjustment, it has been a journey of love, patience, and learning. There have been sleepless nights filled with worry, moments of helplessness, and instances where I feel utterly lost. But amidst all this, there are also the cherished moments of connection, the shared memories, and the deepened bond with my father. I hope that by joining this community, it will provide me with a sense of solace and strength, I know that I am not alone and that there is a compassionate community ready to offer support and understanding. I look forward to learning and growing together with all of you.

Posted by: Emily Johnson on July 29th, 2024

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Sarah Mitchell 3 months ago

Hello Emily, Welcome to the community. I can genuinely feel the depth of emotions you're experiencing. I am 45 years old and have been caring for my mother, who was diagnosed with Alzheimer's three years ago. The initial months are always the hardest; the shock and the wave of emotions can be overwhelming. Like you, I've had my share of sleepless nights and moments of despair. There are days when I feel completely at a loss, struggling to find the right balance. But I've also learned to cherish the small victories, the moments when my mother remembers a cherished memory or smiles at a familiar face. This community has been a beacon of hope for me, providing a safe space where I can share my struggles and triumphs. You're absolutely right – you are not alone. We are all here to support and uplift each other. The bonds you'll form here will provide immense strength and understanding as you navigate this journey with your father. Thank you for sharing your story, Emily. I look forward to learning and growing together with you and everyone in this compassionate community.

Lisa Johnson 3 months ago

I am deeply touched by your story. I am 42 years old and have been caring for my mother, who was diagnosed with Alzheimer's two years ago. Like you, the journey has been filled with a mix of emotions—fear, sadness, but also moments of profound love and connection. When my mother was first diagnosed, I felt like the ground had been pulled from under me. The sleepless nights, constant worry, and feeling of helplessness were overwhelming. There were times I felt utterly lost, unsure of how to navigate this new reality. The adjustment period was tough, filled with a lot of trial and error as I tried to figure out the best way to support her. There have been days when I felt completely drained, both physically and emotionally. Balancing work, taking care of my children, and being there for my mother sometimes feels impossible. But, like you mentioned, there are also those precious moments that make it all worthwhile—the shared memories, the unexpected smiles, and the deepened bond that comes from facing these challenges together. Joining this community has been a source of immense strength for me. Knowing that there are others who understand the struggle and can offer support and advice has made a significant difference. I have found solace in the stories shared here, and I hope you will too. You are not alone in this journey, and together we can find the strength and resilience needed to care for our loved ones. Also, the Share My Story videos are my favorite, so much great inspiration.

Claude Turner 3 months ago

Touched, thank you for sharing.

Michael Taylor 2 months ago

Hang in there, this can be a tough journey without much of a reward, but we know that we were the ones that stepped up and in and made the eternal difference, there isn't anyone who can honor and love our loved ones more than we can. Although we have encountered some very dedicated and loving caregivers throughout this journey.

Looking for recommendations for Memory Care Facilities

I'm a caregiver for my father, currently we live in Nashville, and we've been given the "nudge" by our doctors to start planning for a move to a permanent Memory Care Facility. Does anyone here have any recommendations based on personal experiences? We are willing to relocate. Thanks for your help!

Posted by: Pavel Lesh on August 8th, 2024

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Allen Rigsby 3 months ago

I'm not sure if this is the type of recommendation you are looking for, but NHC in East TN did a great job with my Mother. They also enrolled her in a financial program through TennCare with her Medicaid, through a program called "CHOICES". This greatly helped with the cost.

Tiffany Bays 3 months ago

We live about 30 minutes outside of Nashville, have you found a place? I am the primary caregiver for my grandmother and I know we will eventually need a memory care facility.

Claude Turner 3 months ago

I am interested in facility recommendations in Southern Florida.

Michael Taylor 2 months ago

We are approaching this same time and you would think there would be a lot of great facilities nearby, but there really aren't. We are looking to relocate to get the very best care.

Pavel Lesh 2 months ago

Thanks everyone for the replies, we still haven't settled on a place, but when we do I will post about it and about our experiences there.

Anyone else Scrapbooking?

One of the activities we have been doing with my Mother (diagnosed with Alzheimer's) is Scrapbooking, we got the idea from this thread: https://www.scrapbook.com/forum/?m=topic&tid=116391 (I hope its okay to share a link). The whole family has been involved and its helped bring us closer. Interested in hearing others experiences with it.

Posted by: Allen Rigsby on August 8th, 2024

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Pavel Lesh 3 months ago

Yes! We have been scrapbooking for about 3 years, its been helpful for all of us.

Lauren Thomas LPN 3 months ago

We found that having a small dog in the house has also helped tremendously. I know a pet isn't for everyone, but in our case its really brought our family together.

Emily Johnson 3 months ago

Puzzles, puzzles, puzzles! We have been doing 2 puzzles a week, its made a big difference.

Tiffany Bays 3 months ago

We've also been doing puzzles, we live a few minutes outside of Nashville and we've found a book store that we can buy and then trade the puzzles back into for credit to get new puzzles. Interested in starting a scrapbook, but it feels like a daunting task.

Claude Turner 3 months ago

We have been attending Bingo at the community center, its made a world of difference for me and my brother.

Michael Taylor 2 months ago

We are also ScrapBooking! Its going great, I wish we had started 40 years ago!

Kellen Brown 1 month ago

Just started. Will let you know how it goes!

Resources to help caregivers avoid burnout?

I'm looking for specific resources to pass on to caregivers to help them avoid burn out. I've been in health care for 32 years and caregivers working with Alzheimer's patients appear to be burning out at an alarming rate (this is just my observation, I'm not citing a study or anything). I'm searching for anything from materials, to support groups to assist caregivers in their day to day. I'm located in the Southeast United States.

Posted by: Lauren Thomas LPN on August 13th, 2024

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Emily Johnson 3 months ago

We found the resources on the Learn page of this site extremely helpful as well as the Community Resource Finder: https://www.communityresourcefinder.org/ProviderSearch/ in our area there were several resources that helped us through. Best of luck to you!

Tiffany Bays 3 months ago

Following.

Pavel Lesh 2 months ago

I recently learned how to play pickleball. The game is fast paced, but I've embraced the challenge and find it very rewarding. I recommend it.

Cooking suggestions?

I am the primary caregiver for my grandmother, cooking is something we have always shared. Today I am finding myself concerned about the gas being left open on the gas stove. I'm considering having the gas line disconnected. Has anyone gone down this path? We've shifted to more takeout and vegetable meals (I know not really recommended for her (the takeout)). I just feel so lost. Any encouragement is appreciated.

Posted by: Tiffany Bays on August 19th, 2024

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Claude Turner 3 months ago

We have moved to a lot of pre-prepared meals and meal prep. Things can can be heated up in the microwave (for safety reasons). There are a few decent ones online you can order from on a biweekly basis.

Michael Taylor 2 months ago

We're in the city (Atlanta), we have every single meal catered. Its just easier for us, but by being in the city we have a lot of options as well.

Pavel Lesh 2 months ago

We subscribe to a prepared meal service (local to us). Everything is either ready, goes in the microwave or oven.

Planner Recommendations?

As a caregiver I know that the daily routine is life and death, but things still creep up, in this current season it seems like more than ever. What are you using from your Daily, Weekly, Monthly, Yearly planner? I haven't found one I really love yet, and I'm not interested in an app. My poor phone is so overrun with apps it just beeps all the time. Do you have a quality brand or something bespoke that you love? If so please drop the link in the discussion below.

Posted by: Michael Taylor on August 28th, 2024

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Pavel Lesh 2 months ago

We use a large print magnetic calendar that sticks to the side of the refrigerator. It would be nice to have a smart phone app that would send us reminders, but so far the tried and true methods are serving us well.

Michael Taylor 2 months ago

Just wanted to add an update, we are using the "Finisher Journal" at the moment, I'll report back and let you know how its going for us.

Mark Casey 2 months ago

We also use the Finisher Journal! Let me know what you think, and how it works for you.

Resources for Support Groups?

I've been all over social media, I know there are Groups Online for support (and I'm grateful for them), but are there in-person resources as well? Something like a weekly in-person support group that I could attend? I would even be willing to travel (I'm in Southern Florida).

Posted by: Mark Casey on September 13th, 2024

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Kellen Brown 1 month ago

I'm also in Southern FL, this is the directory I have been using: https://drive.google.com/file/d/1Gyv-zC-3L3uIi6p0YBQBKxE2MMYvJH4W/view and of course: https://alzconnected.org/

Supportive Therapy Recommendations?

I am looking for real world supportive therapy recommendations. I know therapy groups exist, but I haven't been able to find one. Also, online its recommended that early onset patients should learn a new activity. Can anyone recommend a new activity their patient has learned? The examples I am finding are learning a second language or musical instrument. I can't personally see either of those things going well, but if others have lived it, and hound it to be successful I'll give it a try.

Posted by: Kellen Brown on September 23rd, 2024

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Pavel Lesh 1 month ago

We are currently taking piano lessons, so far it has been incredible.

Darla Brown 3 weeks ago

We have joined activities at our local community center.

General Insurance Question

Has medicaid or Medicare or private insurance helped with any of the necessary treatments in your experience? We are at an impasse with continuing to fund required treatments and are looking for some guidance.

Posted by: Cassie Deaner on September 26th, 2024

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Darla Brown 3 weeks ago

Nothing from medicare or medicaid on our end. But we did take out social security disability to help pay for our commercial insurance provider.

Diagnosis of early-onset Alzheimers Action Plan (from personal experience)

Hello Community, I wanted to come here and post what I did when my father was first diagnosed with early-onset. This is my action plan and the steps we took. Please feel free to comment and add your suggestions and experiences.

1. Education (start by watching every single video available on this site).
2. Financial planning, consider your family, insurance and any work responsibilities you have.
3. Stay healthy. Join a gym, quit alcohol, improve your diet.
4. Use memory aids. Buy a calendar, a planner, a pillbox and a notebook.
5. Learn to ask for help with daily tasks. Cooking, transportation and paying bills.
6. Join a Support Group!
7. Talk about your feelings. Share your feeling with friends, family and church staff.
8. Take all of the medications your doctor prescribes!
9. Be Patient with yourself.
10. Educate yourself. You are your strongest advocate.
11. Consider Social Security Disability as an early option.

I'm sure I have more, but I wanted to list what was at the top of my thoughts this morning! Look forward to hearing what others advice, experiences and thoughts are.

Posted by: Darla Brown on October 30th, 2024

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