My Body and Mind Declared Fragile. What now?

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!

@suesea thank you for your suggestions!

I am mourning, already, the loss of my “things”. I have furnishings that I really love, so the thought of having to sell my stuff is overwhelming. I really do not have anyone who can take most things.
How did you handle your move? Did you have to give away or sell your things?

I have to stop now. It’s past midnight and I have to get ready for sleep. I’ve have been listening to “green” noise while I sleep. It seems to help my brain rest well.

Talk with you tomorrow . 🌷🌵😴

My husband and I do jigsaw puzzles too! We have even had a few framed since there are some that are so beautiful anymore. I also paint--but it is more like walls and doors! I am so glad to hear that you have social contacts. I witnessed an elderly gentleman leaving from a doctor's appointment accompanied by a caregiver who was "just doing his job" and completely ignoring the client. While we waited, I had a lovely conversation with him but felt sad that those who live in retirement/nursing homes are often not getting the socialization that they need. I wish you well and am very sympathetic with the chronic pain you endure. I have had a couple of really serious injuries to my shoulders resulting in nerve pain that did finally resolve, but I can agree with you--it is a lonely situation to be sitting up at night in tears when nothing gives relief from the discomfort! Blessings!

Hello and good morning. I hope you slept well. When I moved, I took only what I needed. I left the rest with family. I like the simplicity of what I have and keeping my apartment simple helps me remember what I have and stay organized. Clutter causes me stress, so it helps with my dementia to stay clean and organized. There are people here though who have brought big hutches and fancy furniture and knickknacks from their homes. That adds to their apartments feeling more like a home. I'm in a power wheelchair, and so the less I have the easier it is for me to navigate. It is hard letting go, but just think about what you can't do without and try to take what will make you happiest. The apartments do tend to be small. You may want to get the layout and just plan that way.
I don't like saying this, but they do have problems with theft. So, plan ahead and be prepared for that. Here, they suggest rental insurance in case your stuff goes missing. It feels like everyone has a key to your apartment - even cafeteria staff. Some of the staff, unfortunately, may not be as honest as others. They also recommend not keeping a lot of cash in your apartment for the same reason. I take my money with me everywhere I go.

Initially, the shock of so many people coming in to check on your welfare, help you with cleaning, take out the trash, etc... is overwhelming. At least it was for me. One of the aides recommended I put a note on my door requesting people knock and wait for me to answer before entering (unless there's an emergency, of course). I also asked them not to disturb me between 7pm and 9am. It seems to be working. Initially, people were coming in at all hours and waking me at very early hours. I don't sleep that well anymore, so if I finally fall asleep at 3am and someone bursts in yelling, "Good morning, Susan!" It kind of got on my nerves - a lot. It's settled down a bit. You should be aware of your rights in an assisted living facility in whatever state you are in. Get the ombudsman's number who can tell you your rights and know the laws in your state. An ombudsman will also investigate abuse and neglect. Just try to be aware that you still have rights in these facilities because sometimes it feels like the staff forget that.
Well, have a wonderful Sunday. ☺️

You certainly do not seem to suffer dementia by the way you express yourself. I find your writing succinct and I even detected a bit of humor. Years of bodily problems and trauma will affect any one physically and mentally. I have lived with someone for years with multiple and chronic problems, so I do know, at least second hand. I do wish you well.

@sjm46 thank you for your words of wisdom. I agree with that poor guy’s situation. So sad.

Do you have a puzzle easel, or puzzle table? It makes it so much easier on your neck!

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.