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Pinned by Pat's Gameplan
83
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 (8)
41
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 (5)
53
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 (6)
36
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 (7)
34
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 (3)
33
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 (3)
31
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 (4)
32
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 (3)
30
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 (3)
48
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 (2)
29
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 (2)
30
What's normal when it comes to changes in abilities?
Hi to all of you. I just stumbled onto this site. I don't know if it's normal to have a dramatic turn in abilities or memory or if it comes and goes quickly? My FIL started down this road last December. He has bouts of not knowing how old he is. He's 77 and he thinks he is 20 then 30 then 50. He has always worked right up to when he was hospitalized. One day he will be really good then the next he is hallucinating with animals running around in his room. He can be talking to you normally and then you will see his head turn like he is looking at something. I ask what he is looking at? Oh those sheep are rough housing again it's because it's raining in the room. Then a week later he can be perfectly normal. Then back to hallucinating and not having a clue how old he is or reality again. He is in a nursing home which is the best place for him. My emotional transmission is about tore out. I prepare myself that he will be in the delusional state until his life is over but then he starts putting things together again. I guess I get hopeful that it was just a small dip. Today he was ducking because the chopper was flying through his room. He wants a job. He wants to earn money. He doesn't want to listen to the radio or watch TV. He refuses to engage in any activities. He will sit in his room alone in silence for weeks. I go to visit him almost everyday. He knows who I am and calls me by name. He also thanks me for coming to see him every time I go. I was talking to the nurse today and I asked his about a sensory blanket.? He said I think that would be to easy for him he wants to work. He gave him a bunch of socks and wash clothes to fold and he said it helped soothe him. He recommended that I get some second hand store clothes basket of things for him to fold so he could feel accomplished at a task. He also gets very upset thinking people are stealing from him. He has marked all of his clothes with huge initials all over the front of his clothes. I am almost afraid to give him the extra things because if he thinks they disappeared he will more then likely get violent. If anybody has any similar experiences or has any ideas on how to help him calm his delusions, anxiety, or aggression it would be much appreciated.
Posted by: Susan Edwards on December 11th, 2024 (1)
30
Just want to say Thank You!
This site, resources and group has given me a lot of hope over the past 3 months! The video stories are beyond fantastic.
Posted by: Doris M Smith on January 3rd, 2025 (1)
29
Caregiving is a lonely place, how do you beat it?
I've been a caregiver for my mother in law for 6 and a half months, and I have to say, it's a very lonely place to be. I can't imagine doing this without the internet. Doctors appointments are all I seem to have the time for. This site, and community is a bigger ray of light than people realize. What are other caregivers doing to beat this loneliness?
Posted by: Sandi Rogers on January 14th, 2025 (2)
29
Wouldn't change a thing - Caregiving is difficult, but has its rewards
Caring for my father through his Alzheimer's journey has been one of the hardest challenges of my life. Some days are filled with frustration, confusion, and sadness, but I wouldn’t change a thing. The moments of clarity, when he remembers something from the past or when we share a laugh over something small, are priceless. It’s been a lesson in patience, resilience, and the importance of living in the moment. Though I often feel overwhelmed, the bond we’ve strengthened through this experience is something I cherish deeply. Despite the difficulties, there are rewards that make every sacrifice worth it, and I am grateful for the time I have with him. I'd love to hear others stories of similar rewarding moments.
Posted by: Derek Thomas on February 3rd, 2025 (1)
29
Letting go every single day
Hi. I am a caregiver for my uncle, going on almost 2 years now. I wanted to share a trick I learned a few months back that really seems to help me. Its called "quitting". Every day, at the end of the day I fully quit. I resign. I finish. With this trick I am able to sleep at night, and when I wake up I choose to start again. Take your power back. I hope this helps someone like it's helped me. Take care of yourselves guys.
Posted by: Zander Thompson on February 11th, 2025 (0)
28
Struggling to Keep Up: A Caregiver's Journey

Hi, I’m Marissa Simpson, and I’m the primary caregiver for my husband, Ryan, who was diagnosed with early onset dementia last year at the age of 52. The diagnosis hit us like a thunderbolt, and since then, each day presents new challenges—from managing his unpredictable mood swings to trying to keep up with his gradually fading memory. I feel overwhelmed juggling work, home responsibilities, and the care that Ryan needs, especially as his condition makes simple tasks like remembering names or dates a daily struggle.

I'm reaching out to the community for help and advice. I’ve tried various approaches to make our home environment safer and more comforting, but I often feel isolated in this journey. Whether it's recommendations for specialized in-home care, local support groups, or even just sharing stories of how others cope with similar situations, any guidance would mean the world to me. I believe in the power of community, and I'm hopeful that by sharing my experience, I might help others while finding a little support for myself.
Posted by: Marissa Simpson on February 15th, 2025 (0)

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