Pat's Gameplan | Caring for the Caregivers

Pat's Gameplan

Please Register or Login to join the conversation, It's better with you here!

Pinned by Pat's Gameplan

68

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 f... more

Posted by: Pat's Gameplan

(12)

Sarah Mitchell 2 years ago

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

3

Lisa Johnson 2 years ago

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

4

Claude Turner 1 year 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!

2

Pavel Lesh 1 year ago

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

3

Cassie Deaner 1 year ago

This site, and sites like it are sooooooo needed!

3

Susan Edwards 1 year ago

Thrilled to have found this community!

2

Derek Thomas 1 year ago

Thrilled to have found a community like this.

2

Zander Thompson 1 year ago

One of the best communities with resources that I have found. Thanks everyone who is behind the scenes.

2

Tabitha Stevens 1 year ago

The resources on this site are EXACTLY what we've been looking for. This is the best kept secret that EVERYONE needs to know about!

2

Taylor Kenney 1 year ago

This community needs anywhere that can provide answers. This journey is anything but easy.

2

Marvin Lethers 8 months ago

Great Resource!

2

Anonymous 1 week ago

Love the videos, and discussions on this site! Thanks Pat's Gameplan!

2

All Topics General Caregiving Tips Emotional Support Medical Questions Resources Activities Nutrition Legal & Financial Technology Self-Care

Showing 41 - 50 of 51 active discussions

32

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 the... 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. more

Posted by: Susan Edwards on December 11th, 2024

(1)

Susan Edwards 1 year ago

I look forward to replies!

1

28

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 cal... more

Posted by: Darla Brown on October 30th, 2024

(3)

Susan Edwards 1 year ago

Thank you for sharing this! This is very helpful to us!

1

Zander Thompson 1 year ago

Thanks for putting this together. We need more grassroots resources like this.

1

Dale Teague 1 year ago

Thank you for this list.

1

36

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

(3)

Darla Brown 1 year 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.

2

Susan Edwards 1 year ago

We have also been working to be able to use Medicare for ALZ treatment and caregiver fees.

1

Dale Teague 1 year ago

We are 100% Medicare.

1

26

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)

Pavel Lesh 1 year ago

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

2

Darla Brown 1 year ago

We have joined activities at our local community center.

1

Susan Edwards 1 year ago

Not an activity, but we are spending a lot of time folding laundry, seems to help in a lot of ways.

1

21

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)

Kellen Brown 1 year 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/

2

Susan Edwards 1 year ago

Try ALZ Connected, I am also on that forum and there are links to in-person support groups there.

2

Sandi Rogers 1 year ago

Thanks for the suggestions! I need something.

1

36

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

(7)

Pavel Lesh 1 year 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.

2

Michael Taylor 1 year 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.

1

Mark Casey 1 year ago

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

1

Susan Edwards 1 year ago

Our planner is on the refrigerator, we stick to it 100%

1

Tabitha Stevens 1 year ago

Don't count out online planners as well!

1

Taylor Kenney 1 year ago

Digital on the phone is the way to go!

1

Sandy Travers 1 year ago

I still write a note and put it on the fridge.

1

19

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

(4)

Claude Turner 1 year 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.

2

Michael Taylor 1 year 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.

1

Pavel Lesh 1 year ago

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

1

Dale Teague 1 year ago

We do a "cookie night" that has changed from a single night to 3x a week sometimes. We have family and friends over and make sure everyone is involved in the cookie making process.

1

27

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

(4)

Emily Johnson 2 years 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!

3

Tiffany Bays 1 year ago

Following.

1

Pavel Lesh 1 year 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.

1

Todd Nedderfield 1 year ago

You've got to find something you love to do and make time for it, that's the only way I've found to avoid burnout.

1

45

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

(10)

Pavel Lesh 2 years ago

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

2

Lauren Thomas LPN 2 years 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.

1

Emily Johnson 2 years ago

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

1

Tiffany Bays 1 year 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.

2

Claude Turner 1 year ago

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

2

Michael Taylor 1 year ago

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

2

Kellen Brown 1 year ago

Just started. Will let you know how it goes!

1

Dale Teague 1 year ago

Scrapbooking is a great idea! Thanks for posting this.

1

John McGhee 1 year ago

Scrapbooking and puzzles have been really good for us as well.

1

Patty Teague 8 months ago

We are doing a lot of scrapbooking, its been really great!

1

36

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)

Allen Rigsby 2 years 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.

3

Tiffany Bays 1 year 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.

2

Claude Turner 1 year ago

I am interested in facility recommendations in Southern Florida.

1

Michael Taylor 1 year 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.

2

Pavel Lesh 1 year 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.

1

Susan Edwards 1 year ago

Not TN, but we live in FL and there seem to be more here then anyone else we have looked.

1

‹
1
2
3
4
5
6
›

Welcome to the Caregiver Forum!

What's normal when it comes to changes in abilities?

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

General Insurance Question

Supportive Therapy Recommendations?

Resources for Support Groups?

Planner Recommendations?

Cooking suggestions?

Resources to help caregivers avoid burnout?

Anyone else Scrapbooking?

Looking for recommendations for Memory Care Facilities

Report This Post