My Body and Mind Declared Fragile. What now?

So sorry for your many health issues. At 75 it is a wonder that any of us are walking around at all. I try to take each day with gratitude and make the best of it. I wish there was some magic potion we could take to make us feel young again, but alas it is not to be. No words of wisdom here just encouragement Again I empathize with you and wish you the very best.

First of all, prayers! To you at 75 and to getting some relief!

What outcomes would like most?

Swimming in a pool of spaghetti? Ala Patch Adams? 🎥 (RIP RW). 😊 🙏

@d1swimmer swimming in a bowl of pistachio ice cream, with bing cherries…

at 71, i'm supposed to be wise...but no words of wisdom. i'm so sorry for all u have wrong. I have lots wrong, too. I do my best to take each day at a time, focus on any and all positives, do whatever little I still can, and trust in God to get me thru. He does. praying for u. hang in there.

Hello, Susan. I'm a Susan, too. Nice to meet you. I'm sorry to hear about your struggles. I just turned 58 and gave physical, chronic pain, due to a variety of illnesses, and I was recently diagnosed with Frontotemporal Dementia. My family just put me in an assisted living facility. Most of the people here are much older than me and dealing with similar life problems.

I'd love to give you some great solutions, but I don't think there are any. The support of people in similar circumstances seems to ease the load, but it is still very difficult. I have found the only relief for me, and my depression, is my faith in God. I have to believe in His goodness and that after this short life, there will be something much, much better. When I feel overwhelmed, I love to read the Psalms from the Bible. I try to start my day with prayer and read because I find hope in God is my true strength. He comforts me when my life is just too painful and lonely. I guess this life wasn't meant to be easy, and I'd love to grab some of that energy back from my youth. I miss those days of freedom. I think God does help me get through each day - especially on the days that I just want to quit everything.

I hope you find some comfort in the good that is in your life. I think paying attention to what we focus on helps. If we focus on the negative, we get depression, but if we focus on the good, we find some peace.

I wish the best for you.

I am so sorry. You’ve made me count my blessings that my pain is only in my head. Sleeping must bring a blessed relief to you! May God bless and comfort you.

@suesea
First of all, thank you for writing. And your flower the pansy has always been one of my favorites so I was delighted to see that

I am suffering from the traits of frontal temporal dementia, but still have the diagnosis of mild cognitive impairment. I’m sorry to hear that you have FTD and that you are in an assisted living facility. He said your family put you there. How was it chosen the facility? Did you contribute to the decision or did they just do it for you?
I’m wondering because I am looking around myself right now and just trying to be prepared for the future. And I am deciding where I’m going nobody else and I think that’s a blessing for me but just to be told you have to go somewhere without your decision is kind of scary Because I know what I want and I know what I like.

I am a person who reads the Bible. I study it. I go to church every Sunday so I understand what you’re saying and I thank you for your suggestions and the fact that you have been able to share that with me is very very amazing and it helps me it reinforces me to get up and get moving.

No, I just woke up at 10 AM and I still haven’t had breakfast and it’s 1040 now so I guess I better get one. I hope you have the best day that you can and I will speak with you soon. Thank you.

I admire your courage to face all these difficult issues with some sense of humor and resignation. Once you get a diagnosis for anything, no matter how minor, it never seems to be resolved in your records! So, I am a "fixer" and used to taking action to resolve things, but with A-fib you never are "cured" and you are in a similar situation, I guess. So we have to find our "happy" place and do what we can, when we can! I have a group of nurse friends I worked with and after comparing notes and diagnosis and various treatments we all decided that what we had could be worse! So make the most of every day, and enjoy the little pleasures, no matter how humble. Be as social as you can be and gain strength from the good will of others! Take care.

Hello again. ☺️ Thank you for writing back. I'm happy to hear you also find comfort in God. I think that faith is such a strength when everything in your world, including your body, seems to be falling apart.

When I said my family put me here, I meant that they did all the footwork for me because of my current limitations. I struggle with forms, remembering details, and get overwhelmed by the process mentally and emotionally. I used to be pretty good with it all, but not so much anymore.

My little brother is an attorney and my Dad and Step-mother are very good handling business issues. They all three became my financial power of attorney. We set that up early and so they could step in and help me. They looked for an assisted living facility closed to where they all live, and after finding one they liked, they met with the administration here and did all the paperwork for me. I think I signed one piece of paper.

It's important that you don't only look at what you see online, and when you go, if you or anyone else who is reading this goes to a facility, look everywhere. Look at the skilled nursing area and go to the memory units. That's where you'll get a better idea of what the resident life is like. No place will be perfect, but some are much better and safer than others. The place I'm at is nice, but it is a very difficult adjustment. Unfortunately, residents tend to only talk about the bad stuff that happens or has happened, so sometimes I get scared here -- and I'm at a nice place. I try not to think about when I will end up in the memory units. I haven't heard one good thing about it, but I'm already here and there's no guarantee the care would be better anywhere else, so that's when I have to turn to God to help to face all this. I suppose, as horrible as it sounds, there is some comfort that may be when I get to the point of going into the memory units, I won't remember the bad stuff that happens. 🫣

Definitely read reviews and search for a place that has high ratings, but if you can, talk to the residents that live in the place you're considering. I've found the residents here to be incredibly kind and friendly. They'll tell you the real truth of what life is like. Also, activities are so important. This place has aquatic therapy, a greenhouse, an arts and crafts room, a Tavern, and a cafe. It looks pretty and pretty on paper, but the thing to look for is how often residents really get to take advantage of what's offered. Also, consider transportation because it's very important to get to shopping or medical appointments. Our transportation van has been broken for a couple weeks, so that's causing some trouble. There are other Medicare and Medicaid options, but when the driver from the facility takes us somewhere, they don't leave. They stay the whole time and are there to take you home when you're done. That's definitely comforting when you have dementia or are living in a new, unknown area, like I am now.

Wherever you go, there will be good and bad, but the healthcare is essential. I guess that's common sense, really, but this place messed up my medications a lot when I first moved in. That scared me because if my dementia had progressed too much, I may not have realized their errors. I did stay despite the mistakes and it seems to have been fixed. Thank God. I hope it stays that way. I didn't leave because my family is so close and, like I said, I can't guarantee another place would be better.
I hope I'm not rambling too much. I've been living here since March 20th, so I'm still in the adjusting phase. I met a woman this morning though who is 104 and has been here 20 years! I asked her how she did it and was amazed at how healthy she looked. She said, "the Lord has truly blessed me " That helped me see that even being in an assisted living facility could be seen as a blessing.

I hope some of this was useful and that I answered your question. It's been a long day, and I was about to to go to bed, but I wanted to write you back. Feel free to write me anytime, and I hope you get the best care and find the place that's right for you. God bless you, Susan. 🩷☺️

@sjm46 yes! Thank you. I am as social as I can be. I don’t drive, however there are 18 volunteers who are available to drive me to appointments. I have become friends with most of them. So, I am a social butterfly.

I live alone. I don’t mind because it frees me up to pursue my hobbies. I have taken up painting, and work on jigsaw puzzles. It helps distract me from pain.

Thanks for your reply. Have a blessed day!