You have had a bad experience with people who don't know how to relate to or understand just what we deal with 24/7. Each one of us has the same basic issues with care giving but the details run the gamut. First let tell you that each of us on this forum know and understand what you have been thru.
Hopefully, I can help a bit. The people who responded in a very inappropriate manner can not be considered friends if they later realized how unkind they were. They should be removed from your thought processes. You have enough to deal with on a daily basis without taking on their lack of empathy or even a willingness to listen and try to understand. You don't need this distraction or guilt load. Don't spend time or use your energy to figure out where they are coming from, Use your time and energy to help your wife and to take care of your needs too. It's okay to spend your valuable time and energy where it is needed the most...on your wife and yourself.
I, too, have not hd time, energy or stamina to return to the things I loved doing before my husband began to go into Dementia a few years ago. He is 94 and I am 89. His daily physical being runs from the top of a roller coaster..a good day, then drops to the bottom of a pit and lasts from one to three days.
There are multiple medical problems along with this Devil Dementia..his and mine. I will tell you that my typing is often terrible due to failing eyesight so please overlook the errors. I try to correct them but I miss a few.
Right now, he is off food, we are looking for things to give him but he has lost his taste buds and food has no taste other than that of plywood....at least he says this is what it tastes like. His energy has fallen into the pit, balance if okay with the help of walkers and rollatores and our team of round the clock help, our daughter, son and myself.
We have found that a dense of humor..lots of it...get us thru terrible days. Even on his worst days, we look for things to laugh about.
Our team is like family. Try to find...by trial and error...people he can talk to, share memories from whatever period of time your wife can remember. You may have to start the conversation, but she might pick up on something and begin to share.
we have c.g.s ranging from 40 into 70s. Even if he doesn't do a lot of talking when they relate stories, he laughs and let's them know he is aware of it all. Most of time he chimes in and then shares something of his life. There is always laughter.
They call him "The Boss" and he loves it. He pushes back at times but they know how to cajole him into doing what needs to be done.
Don't spend all the time you could use doing things you enjoy. Start splitting it...I have found that this helps the Mr. as much as it does help me. Even if he isn't feeling like talking a lot, he does listen as I tell him what I was able to do with my time. He actually thanked me for looking out for myself. The care givers willl leave the room when I ask them t, this give he and I tme alone to just talk listen to music or even take cat naps together, he in his char and I pull up a box foorstool, jut the right height so I can rest my head on he shoulder and we hold hands, Touch is important and makes the separation time better because he looks forward to the together time. He actually asks them when I am coming back It's almost like a date.
As you can tell, when he is at the top of the roller coaster, he can think logically, speak about things pretty well. It is the current things that he forgets.
Music is a huge help in giving me time to do my work or find some down time. We also play soft quiet instrumental music when we go to bed. It is very soothing to him
Nutrition is a major problem here. We are working hard to find things he will eat, knowing full well he wont enjoy any of it as his taste buds are shot and the only things he can taste is sugar. You would be amazed at what we feed him with a dash of extra sweetness on it or in it.
I talk about details with friends and extended family only when they ask the right questions that let me know they are interested and want to help in some way. they don't realize that venting is a tremendous help but most people are kind enough to ask and listen. I have been amazed that people I hardly know ask about him and often ask if they can pray with us before they leave . There are good people out there who really care and as I write this, I'm thinking that perhaps some who have been insensitive to your situation, probably don't know what to say or what to do. So...it comes out as being very insensitive.
At my age, I've learned to read body language and facial expressions very early on in the conversation and I say "Thank you for asking, we're doing as well as we can expect:", then I move on to to something else.
Finally, I can tell you that my greatest help in finding peace, comfort and strength over the past five years, is to sit down and pour my heart out in thanks for all the positives we see each day...albeit my husband's physical stepping stones or the down times...and let Him know how grateful for everything. We know Heis with us on this journey and He will give us all the strength we need and guide us on the path to His Will
We need to listen, trust Him and follow His guidance. We are at peace and we are strong...what a blessing.
I pray that you will find peace and that things begin to settle a bit for you. I sense strength in you.
Remember, you have Friends right here who will share your ups and downs so that you feel the thoughts and prayers we send your way.
I too am dealing with some new major issues in the new world and I will be looking to this forum for help very soon. I look forward to the input from people who know and understand how much it means to "talk" to people who truly understand.
Blessings