I am in the process of looking at assisted living facilities. My husband is low moderate now and starting incontinence issues. He also is having difficulty talking and communicating to where I have to try to guess what he is saying. I am so frustrated most days with the whole thing. He was diagnosed in 2008 but has had health issues for almost 10 years he still has a moderate amount of awareness. I was told this is rather unusual given his low MMSE score and it can be good and also not good. He knows I am looking at facilities. I have tremendous guilt about placing him especially when he says things like "so when are you going to throw me away?" How does one move past the crushing guilt to actually move forward?
Please don't feel like you are doing anything wrong. You are doing what is best for you and your DH. Four years of AD caregiving and 10 years of over all caregiving can get anyone down. You need a break yourself. Keep in mind you are doing the best you can, there is no easy way out of this. And once placed you will still be looking out for your DH, you are not throwing him away. You are just adding many more to help in his care.
All I can do is send you many (((Hugs))) You and your DH are in my thoughts and prayers.
So sorry you have to go through this as so many have before you. Try not to feel too much guilt because you need to take care of yourself too and do whatever is necessary for BOTH of you. They become so self-centered and think only what they want with little or no consideration what is good for the both of you.
Have you read about the various stages? I find it difficult to believe he would be considered "low-moderate" if he is near being incontinent...that usually happens at late stage 5 or 6...of course everyone is different. And...remember things can change on a dime. The Fisher Foundation web site is really good in explaining the stages and what to expect and when to expect it. Also..no one knows you dh like you do. Hugs coming your way.
From the sound of your post you understand what you feel you need to do. Ultimately then he needs more care than you can give him by yourself. It's very hard on both of you that he's so aware.
It's been said here many times over the years and I was told by the professionals that incontinence "is the deal breaker". It's sad that this disease brings so many of us to such hard choices. (Some of us never even had that choice.)
Consider telling him that he needs more care now than you can give him. And try not to feel like a villain because you are finding the path that makes sense to you. Neither of you are at fault. It's the nature of this terrible disease.
CO2, I am in the final weeks of my beloved man going in to care, applied not long ago, and the Medicaid process went quickly.
As for guilt, well, there are days when he is having a "good" day, that I think, oh god maybe I can do this. When he was in the respite for 10 days I had almost made up my mind to go the whole road.
Now, after 3 nights of NO sleep, and last night was lucky enough to get a little, I know, I know, it HAS to be done.(just a few weeks ago he slept "enough" in the night. Now, he is up every 15 minutes, even with more seroquel.)
In just one month, he has gone from incontinent but able to make it to the toilet, to urine everywhere, just stands up and pees where he is. And when he does make it to the toilet, pees everywhere all around.
He has gone from rare poop incidents to almost daily.
He can walk one minute, and the next is on his face, this is every day. He is covered in bruises. In just TWO days, he has gone from quiet to grunting and moaning constantly.
There is so much more, but I am telling you this TO SHOW YOU HOW FAST IT CAN CHANGE!! And like me, if you do not have help EVERYDAY< (I have only 10 hours per week), you will suffer greatly, you will be getting insane and screaming and crying and having heart palpitations.
Personally I feel we will have guilt no matter what, and even more when horrid family members pile it on. BUT---it is either placement or death at least for me at this point, I am a walking sore shell. PLEASE WE NEED to figure out a way to handle this....pray to a GOD even if you don't believe, fall and your knees and yell for help...or if you are blessed to having caring people around, have them help.
Dear CO2 and so many others here, how my heart goes out to you. WE MUST MOVE FORWARD, and we MUST find the strength and love ourselves.
We all sympathize with your feelings. We had them too. I waited much too long to place my DH. After fracture in my neck and other injuries to my shoulder, pulling him up. I lied to him. I told him it was temporary, so I could have surgery on my neck. Which I did have. When he asked me what this place was, I told him it was a hotel for people that couldn't stay home alone. He never questioned it again. He became very content with his new friends. Maybe it will be easier than you think. You just have to finesse it a little. I'm thinking of you as move toward it.
I thank you all for your input. I need to find a place that will take him as soon as I apply for Medicaid. So many places require so many months or years of out of pocket pay before they will accept the Medicaid. I think part of it is the fact that I will pretty much have nothing left as far as savings. But I know most of you have been there and done that. His incontinence is occasional and Ihave just started with the depends but as you all say, things can change very quickly. I am visiting a place tomorrow and then have another facility that sounded encouraging. After the holidays Ihave to visit several funeral homes to get funeral prices as I will have to prepay his funeral. What a comforting thought!! Again thanks for all your enouragement. I know Iam not alone.
Update CO2... just so you know. I thought perhaps I was starting too early, now, I just was informed he is too far advanced to be placed in the Adult Foster homes I was trying for. You see, we have to be prepared. Now I am trying not to despair and working on alternatives.
OHHH myyy...now what are your alternatives?? I know you were working so hard on the approval of medicaid and would have made a move to place Dado if they had not taken so long and as you have pointed out medicaid went much faster with your application they many people have experienced.
I only point this out for those that haven't followed your ordeal so that they may not want to wait for placement in a near by facility until their dh becomes even worse and the only other alternative they have is a facility that is miles away.
Keep us posted on what your other choices are Coco....hugs..hugs.
CO2 I am in the process of interviewing assisted living facilities as well and I can tell you I am having no short of anxiety attacks over this. Meds are helping me...the costs are overwhelming. And in our case, all but one facility are " no poke" meaning they don't do the insulin so I would have to go twice a day or hire a nurse at additional costs. What woke me up was an accident I nearly had last week. I was reaching for something in the bathroom and slipped and had I not regained my balance, I would have fallen backward and hit my head on the tile floor. THEN WHAT???? Who would be able to come and help with DH while I would have been in the hospital? I am finding some measure of comfort and control and less guilt with this scene in mind...Still when we had to go last Fri for the physicians report, which is required, the look of fear and hurt in my DHs eyes is something I won't soon forget and it was heartbreaking..I re explained the reason for this, he seems to have understood it and for now we just leave it. When I go out with the rep who is showing me the facilities. I just tell him I am going shopping with a GF.
My Caregiving started with the Dx of Dh’s Mental Illness. At that time he was still functional, could drive, but needed me to do all the paperwork; keep track of Dr. appts, refill meds. As he declined he’d periodically ask me to promise not to place him. Sometimes he’d emphatically state, “I won’t go to a place like that.” My answer was always that he would stay home as long as I could manage it, but if anything changed that, then I would have to, but it would be the best place I could find. Then came his Dx of VaD in 2006, 18 years later, and he was already starting Stage 5. With Learning Disabilities and Mental Illness on board, how could /would I have known Dementia had moved in? Having no idea of the path ahead, I told the people at his Discharge Conference that I could not continue to do all his care alone, but with help I could, and that the best place for him was at home. It wasn’t until 2010 that I began considering Placement. I’d Caregiven while doing Colonoscopies; a Hernia Repair, a broken foot, 12 teeth extracted at once for a denture, and a toe amputation. But, he was declining more and our mortgage was underwater. My first enquiry, of our Case Manager, got me this response, ”But you said you wanted to keep him home. It was the best place for him.” I did say that., . .in 2006. I began searching; placed him on 2 waiting lists. NHs were my only options because ALFs don’t take Medicaid. Then, in late Fall 2011, I found an ALF which did take Medicaid (new program). It would be financial suicide for me, but our options were narrowing. DH wasn’t happy about the situation, but the house had to go into a Short Sale (better than foreclosure). He had to have care and I had to find a place for me. January 2012 and everything went to Hell. The Placement was postponed; DH had an event, causing an altercation and went to the hospital by Police escort. Multiple medical things happened, ending with him placed in a NH. I juggled keeping up with his medical care; finding an apartment and downsizing into it; and getting through the Short Sale. I saw him through the added Dx of critical Aortic Stenosis, and the mess his relatives caused, telling him he was going to die within the year. He did—less than a week later, very easily while resting GUILT has no place in the Caregiving Vocabulary. Sadness, hurt, anger, love. … but never guilt. I did my best by my DH at every turn. Even during the day before he died, I told him, ”Only God knows when we’re going to die. When He tells you, then you’ll know. But we are not going to worry about that. If that idea comes in your head again I want you to think about seeing your Mom and sister; meeting my Dad--- and don’t forget all our pets waiting at the Rainbow Bridge to go with you---Tessie, Nixie, Chantey, Dusty, Willow, Luna, …..” and he chuckled. I did the best I could. It was enough.
Wow....you did great and gave much...nothing more could be expected from you. You can live with no guilt and pride in what you gave up for the care of your dh. Good luck to you in the future and may your life be full and complete.
Exactly my point. Every one of us is on this hellish path and long or short, agressive or passive, we do our best everyday. Sometimes our best is Placement because the care required is past any one person's ability to do. Guilt implies wrong doing;intent to harm, or not preventing harm. There is no guilt when you do your best--even when sometimes it fails. We cannot save them. What we can do is get them through in dignity with love.
I don't know where you live, but this is how it worked for me in FL. I looked at many facilities before I chose Emeritis, an assisted loving facility. We had LTHC ins so that made it easier. I set the whole thing up but wasn't ready to place him. After the injury to my neck, I called and told them it was time. They told me to pick a day and bring him over.I know that if you want to place someone they will help you. I've seen them sitting and working with people on theur finances. They file for medicaid or veterans benefits for you. If he is a vet it will go faster. Maybe you can check some places that have web sites. I checked NH's too. Wasn't happy with them. The ALF treated him really well. He did wind up in the NH toward the end. He died in the ER due to sepsis. It was hard but it was the best thing for both of us. I hope this helps you a little. God Bless You
CO2, do not let yourself fall into that guilt trap. You are doing what you need to do ... and also what is best for your spouse. In my situation, I actually toured a local ALF with my wife the very same year she was diagnosed to see if she felt she could be happy there when "it was time" or if we should check out some other places as well. At that point she was totally lucid most of the time and I wanted her input since we knew that, eventually, she would be placed in an ALF. (We have long term care insurance and had already occasionally discussed when we'd use it before Alzheimer's became a reality for us.) I told Clare that incontinence would definitely be a trigger ... I knew what I could handle by myself and what I couldn't. After listening to others in my support group who were dealing with incontinence at home, I knew that I just couldn't do what they were doing ... each day changing bedding, cleaning floors, etc. and often doing this many times a day. Clare has already had several accidents during recent months, but occasionally is not every single day, so all is still "well" for me. But when she slips down that slope to having accidents in bed and when fully dressed on a regular basis, THAT will be my tipping point and I will place her in an ALF ... and, hopefully, not feel guilty. I know now that I made a mistake by waiting a year too long before placing Clare in day care programs to gain some respite time for myself. I kept kidding myself that I could be with Clare 24/7 without anyone giving me a break. That was a huge mistake. I know that now. I DID guilt myself into waiting too long. But I won't make that same mistake again and be guilted into not placing Clare in an ALF when daily incontinence arives. So, hang in there, CO2, and do what you think you need to do. Period!!