We are in this alone....

I have heard the same thing from so many people in this situation. The only thing that I can think to say is that it won't go on forever. Or at least that is what everybody tells me about my situation, two parents in need of care--one in a nursing home and the other in her own home. Both are very suspicious of any outside help.

I thank everyone for their comforting words and advice. My son is here and it helps, but I still have to do the bathing and taking care of ostomy, and dressing him. Some days are ok. Some unbearable. Going to see elder care lawyer. I went to regular lawyer 3 years ago, but need to save what I canif he is placed in nursing home. Kids fighting me doing that. But in all fairness they are helping in a huge way. My daughter will come for a month after my son leaves. I promised just like everyone else "No you wont go to a nursing home"..Well I still am trying to be good to my word. Friends...well, they used to call for dinner, movies, etc. Now I get the call from wifes saying "lets do lunch". No one wants to be around this and I cant blame them. Now I found out my grandson is sick and I just want this all to go away. Worst disease ever!

I truly hope that having your son for a few months will not only give you some respite and allow you to exhale - but also give him a really clear picture of the toll this is taking on you. Perhaps you two could have some conversations where you lay it out for him and ask for help. You can not keep going like this - your mental health is already suffering, your physical health will not be far behind. Best of luck, sending good vibes that good changes are on the way!!

If your son has arrived and is staying until APRIL! You are no longer alone. That is 5 months! Hopefully his 5 month stay (why is he staying so long? ) will be another person to be a witness to your struggles as well as a helper. He could validate your situation with others.

We put in life estate 3 1/2 years ago. The look back is 5 years. I did have a lawyer do that. But I was told once my husband passes they will take house to pay what is owed. I also have a few dollars in bank and they will take that as well. So not a good thing all the way around. thanks for information.

Did you consult a lawyer before you transferred the house?

There are provisions made for the community spouse when one spouse goes on Medicaid. You don't lose your house if it is jointly owned.

IU thank everyone for their comments. My husband still has some good days and can still take care of his bathroom needs. Buy even changing channels on tv is a problem. My son came this week is staying til April. Will take him out a couple of times a week. I owe my house free and clear if I were to put him in assisted living, they will take my house after he passes. So that is not an option. I would have no place to go. We put in kids name but did it 36 months ago so we are not at the 5 year look back. He has had ostomy for 10 years never wanted to learn to change the bag so I have to do it. He cant even remember to put the supplies on the counter for me to do it. He used to remember the pieces we needed. Its just a challenge every single day. I dread getting up. He has no concept of time so will get up at 4 a m and tell me its time for me to go play tennis. I could go on but you all know what I am speaking of. Daycare is $80 a day, cant afford that either. Elder care unless your suicidal they wont help. Its hard losing, friends, losing him, pretty much stuck here. And doing the bills and taking care of house and him. I am close to 80, how long can I do this. The kids all big talkers from afar. They think I make up this stuff. As I said ,,,in it alone. Thanks for the encouragement. Joycee

Joycee1 Yes, we caregivers are alone and others don't get it and don't care. But I get it and so does everyone else on this site cuz we are dealing with similar situations. So at least you have us to lend you support.

You're right. Many of us are all alone with the pain & anguish that goes hand & hand with the full time care of a loved one with non-stop needs, not to mention the misery of dementia thrown in, at home with no help. Friends don't want to face their own mortality or see your husband and think, "Oh my God that could be ME next." And that's the sad truth of friends not being able to face their own fears. Family members try to be helpful and offer suggestions, but they don't 'get it' because they're not deep in the trenches 24/7 and have no idea WHAT is going on. They mean well, but we know what they say about the road to hell being paved with good intentions.

The question is, how do you go about changing this situation to save YOUR life and YOUR sanity? You do not have an ostomy, nor do you have dementia. Yet you've devoted who-knows how many years to full time care giving and now you're about at the end of your rope, and rightly so. Dementia normally reaches a point where you cannot care for the sufferer at home anymore, even if you sincerely want to. It's just one of those facts of life you'll have to face up to one of these days ANYWAY.

If you can afford to place him in Skilled Nursing, do so asap. If you cannot afford it, apply for Medicaid and have him placed. He may not be happy at first, but he will adjust. You will go visit him every day, if you'd like, and you will bring him little gifts & treats, and you will sit with him and stroke his head and tell him you love him, but that you have to go home and sleep and shower and live what's left of your own life in some semblance of peace and harmony.

I work in a Memory Care community as a front desk receptionist. Every day I meet with husbands & wives who have placed their loved one here, because they had to, and they come to visit. They take their loved one out for a walk around the property sometimes, or for ice cream, or lunch, or for a drive. Or sometimes they just sit and talk. One gentleman comes twice a day to see his wife; once in the morning until about 1 pm, and then he comes back around 4 and stays till 8 pm. Right now, in fact, this gentleman is setting up the conference room to serve Thanksgiving dinner to his wife (who lives here) and his daughters. He even brought his mother's fine china with him! He's found a way to have his own life, and to have HER cared for properly at the same time. It's a win-win for all concerned.

It's okay to surrender and say Enough. It's time now, don't you think? Please get the help you so desperately need and DESERVE. You are worth it.

Joycee I can feel the pain in your words. I know that pain, not from being caregiver to my husband but being caregiver to both of my elderly parents who each have different types of dementia. They too would not accept any outside help to give me a break. I was on my knees. Eventually I had no choice but to get them into a good nursing home. Things are better for me now because although I still do a lot for them, I can walk away after a visit and switch off for a while. Is there any way you can start the ball rolling in terms of finding a home for him? I know things moved pretty quickly when I decided on that course of action.

Joycee I am so very sorry. Please consider placement for your husband. I can't think of anything else that you can do. As you say, you are alone, and there honestly are limitations to what one human being can do. I am so sorry.

I found Moms Church was the worst when it came to even visiting. I can see not wanting to visit because you cannot have a decent conversation with a Dementia patient, but the caregiver would enjoy some adult interaction. The "church ladies" would visit after Bible study until I put Mom in Daycare 3x a week and BS was on one of those days. Her minister never visited and I mentioned that. I know it got back to him. When she went into an AL, there was a member there that the Church visited but never Mom. I would see one of the "Church Ladies" and they would say they saw Mom when they were visiting Mr. A. and they stopped to say Hi to her. Really! this is a woman who devoted lots of her time to the Church. But, she wasn't part of a certain cliche. When she passed, I had a family friend do her service.

By eldercare do u mean homecare or LTC placement? Medicaid can help with both. So, if you are waiting for placement, then see if Medicaid can help with an aide a few hours a day.

Truly a difficult situation, my retirement has been engulfed with other peoples needs. Few understand the difficulty of caring for another 24/7, I do, and I will never do it again. Now I help by finding a nice home for them to live in, attend to their needs from an arms length away, allowing me time to unwind and have some normalcy in my life.

Perhaps it is time to consider AL for him. There are some very nice places out there today, not anything like 50 years ago and all the post stories people keep rehashing. Why not tour a few and see what you think.

Sending support your way!

So sorry to hear that you feel so alone. I would say most of us on this site that have been caregivers can relate all too well and on a daily basis. Unfortunately people do not nor can not understand the toll it takes on our emotional and physical well being unless they walk in our shoes. You really learn who your “people” are when going through this journey. It is much easier for people to back off from a situation that seems never ending and hopeless at times. Hang in there and be strong. I do not understand why things happen the way they do and I never will. My mom cared for my dad with Alzheimers and it took a great toll on her health. She ended up with pancreatic cancer and passed. It will really knock you down in every way. Today is also hard being a holiday. We have visions of what we would like our lives to be like but our reality is much different. Please take care of yourself and you are among many other friends here that can relate to how you feel.

Joycee, I'm sure you feel alone. Most would in your position. Keep posting on here. You'll soon find out that there are many like you that can cheer you on, be supportive and possibly even guide you to resources you never even considered or thought were possible.

Please don't give up. Things can get better.

You definitely need help. It really doesn’t matter if he doesn’t want others in the house. You need some time away at least a couple days a week. He will have to accept the new change just like you have had to accept this change in life. Maybe with your children you need to ask specifically. Can you come for 2 days this month and stay with him while you get out of the house and get a break.
Also it may be time for him to move into a care facility if it too much for you. Maybe there are other facilities besides the one that you are still on the waiting list for.
I know this is very difficult but also try to be as positive as possible when asking for help or even seeing old friends. Say hi and be glad to see them. Even if it is just in passing. And when you do get help, and you can get out more, invite someone to meet for coffee. Be genuinely glad to see them. Sometimes people don’t know what to say or do but they can follow your lead. You are in my prayers, Joycee1.

I wasn't.