I had a call from the social worker at the gero-psych unit up north. DH has been there for almost a week. He had some violence issues, and now rather than aggressive they describe him as "resistive" to care. He hit a nurse. Also, they informed me yesterday that DH seems to have a bug that several others have there at the unit causing loose BM's. Today they tell me he has C-difficile as well, and they are using isolation techniques. We will not visit this weekend. My kids have finals next week and my daughter catches anything in the wind. Even though its a contact bug, not airborne, she'd get it somehow.
All who've evaluated DH there at the gero-psych, and also in the last dept at our local hospital were amazed to learn he came to them from "HOME" and not a facility. They were surprised I was caring for him at home. He was/is getting so hard to care for which is, of course, why he ended up there.
The social workers will assist with finding placement for DH. I am NOT AT ALL impressed with the ratings of nursing homes around here, and have consented to the search for an appropriate, good rated facility within a 100 mile radius.
It isn't really hitting me hard yet. I know it is happening, but the impact is not significantly affecting me at this moment. Perhaps shock is the real emotion. Nobody, especially me, should be shocked, but I don't know what else to call it. NUMB? Reality is numbing. Kids are OK at the moment too, but we all will start having our own thoughts, visions, emotions soon.
I read a caregiving manual early last year. I'm not sure what the husband had, but dementia seemed to be part of it. Her light bulb moment came when she finally realized that she couldn't get her husband up off the floor one day. She called the paramedics and they took one look and brought in a third man to do it. She recognized that she had been breaking her health and her body trying to do the impossible.
It sounds like you are getting the same wake up call she got. I'm glad you are letting the social workers help you in this situation.
NR, I'm so sorry, but I'm also glad that he has "shown his colors" to them. My DH would probably hold it in and be a Southern gentleman, and they would think it was me who was nuts. He can only do that for so long however, but he does it often!
It's hard to keep them home,...but some of us do because of guilt and wondering "what everyone would think" and/or just being an idiot. (Remember "Hit Me, Hurt Me, I love my job"...was that part of an old joke or something...????) One day I am a basket case and the next day I say, "well, it's really not so bad"...then the tsunami hits again. I think of that "hit me hurt me" line quite frequently. Have no idea where it came from.
NR, I know this is hard, and I think you are numb, - and then you'll grieve and wonder if this is the right thing. Just rest assured that all these decisions are now being made by professionals in the mental health field and you can blame "THEM". It will be good when you can really take a deep breath and laugh with your eyes again. Believe it or not, that day will come. Nancy
Diana when safety becomes the issue you have to act. Sorry it has to be this way. At first I thought I had done a terrible thing when I placed my husband. After I got my own sanity back I realized I had made the only right choice.
This seemed like a good place to post. I have been reading, but not posting for the last few weeks. My husband got an infection that spread to his bloodstream and was in the hospital for a week on IV antibiotics. And, no surprise to anyone here, he lost many skills...couldn't walk, stand, feed himself, etc. He's been in a rehab facility and has recovered a lot mentally, but has no physical independence---in a wheelchair full time. I, too, have had him on the floor for hours while I tried to figure out how to get him up, have pushed and prodded trying to get diapers changed, and now realize how bad it was. There is no way I can bring him back home since he is less able than before. So I have found a memory care unit in an assisted living facility that will take him...many will not when they cannot stand to be transferred. It's 45 minutes away, but I can live with it. I still have tremendous feelings of guilt, sadness, anger, uncertainly even, but I think that the infection was God's gift to me...breaking the cycle and giving me the opportunity to see what I had to do. Neither one of us was enjoying our life as it was. I think he can find some happiness if he is not being asked to do more than he can. And I will enjoy what I can while mourning what will never be.
P.S. It's sort of bittersweet that while he was in the rehab we tried Keppra for the myclonic jerks and they have almost disappeared. My husband now says that his Alzheimer's is gone---for him the muscle jerks were the only symptoms of the disease that he could see.
New Realm, I know that it's a lot to worry about, but if they are saying it's time then it probably is. You have been remarkable with him and with all you have going on. Hopefully you can find him a place that your comfortable with and one that will care for him as you would want him cared for. Best wishes!
FLgirl, You know you maybe right about God's gift, it's now time to take care of yourself. Good Luck!
New Realm, you went far beyond what any person could/should do when you had your DH at home. Just know now that this is what has to be for you, your DH and, most of all. your children. If you've read bluedaze's story, you know that she and so many others here have already gone through this. Stay with us here. We're all wishing the best for you.
Best of luck placing them both of you, New Realm and Fgirl..its such tragedy that its the only resource we have now once we feel they cant be at home. Fgirl how ironic that the keppra is helping but glad its working. those jerks are horrid and i am glad he will get some relief in that part of it anyway. my best to you, divvi
Numbness, guilt, emotional pain - they're all normal feelings, but you just can't continue the way you have been going. I hope some peace and sanity will return to your life once he is settled in.
I read you all and am grateful that to this point my husband hasn't been aggressive.. and SO FAR hasn't fallen. I know I could not get him up. I know that would have to be a deal breaker for me, as would his being unable to get his own compression stocking pulled up. I know these things. I know it will not be easy and I dread it. New Realm, FLgirl, Nikki.. who else right now? you are all in our thoughts...
I have been reading as many of the posts as I can for months now. I wish so very much that this was here many years ago when I had so many questions, concerns and fears of the unknown. But it is here now for all of you who are just starting in this yucky world of AD and those beyond that. I guess it is just how life goes but now that the time has come to actually accept in my mind that my husband needs to be in place where he can get more care than I can give him, I can barely stand the thought.
I cried myself to sleep last night and as I lay there and I could hear his soft snoring and I could feel his shifts in the bed. Those sounds and movements have been my comfort, contentment and security for over forty four years. As much as I hate the AD and just wish it was over, my heart just won't let go of my love who is now so sick and so far gone. He isn't there anymore but his body is and separating the two is causing pain that is almost unbearable. As bad as all this has been, my mind still says "but he's here."
FLgirl, you wrote such profound and powerful words when you said "and I will enjoy what I can while mourning what will never be." Oh my gosh, could there be any more meaningful words than that. It says it all.
Reading Nikki's posts and all the others who have reached this point really confirms how AD punishes right to the bitter end. My heart absolutely and totally breaks for all of you.
Coming to the end of this horrible journey, is the final and last fatal wound that Alzheimers inflicts on us and it is by far the worst and most painful. The heart can barely stand it. My heart is so broken that I can barely see any glimpse of light or hope and yet I know they are there. I just miss and love my husband so much and I guess it is just what FLgirl said "mourn what will never be."
Thank you all for words of support. Your prayers and cyber hugs are felt, indeed.
FLgirl, it is so hard for us to see and feel when that threshold has been reached until the majority of our responsibility is upon others. In our cases, hospital/rehab staff. That is when we can step back and be on the outside looking in. And we get a much clearer picture. As Anitalynn said, your words "And I will enjoy what I can while mourning what will never be." are indeed quite profound. My heart and prayers are with you as you go through this transition.
Anitalynn, I will be thinking of you, and so many others who are realizing they too are approaching these cross roads.
Has anyone heard from Nikki? I know she too is just in the first days after placing Lynn.
I really thought I'd be able to keep Paul at home, even if it meant hospice at some point. I feel a sense of disappointment in that. Yet I knew, when I caught myself cringing at the thought of bringing him home from his last hospitalization. It was hard, shocking, and yet liberating for an instant....like chains being broken away from my feet, or choking hands taking a grip off of my throat, when I said to the DC planner, "I don't have help at home, and we were going to consider placement."
I learned that DH had a tumble today. Nurses aide was getting him up and apparently his blood pressure tanked. He got a skin tear on the elbow, and a bump on his eye brow. The RN said the doc was there at the time, checked DH out, and his BP was remaining low. So, they are giving him IV fluids to bump it up. He is getting Flagyl for the C-diff infection too. I have to wonder if these two issues, the C-diff (hospital acquired, and very contagious, and very hard to irradicate), and the Blood Pressure/fall risk issue is going to make placement far more difficult.
I almost waited too long for placement. After the infection and the hospital stay, my husband can no longer stand on his own to pivot in and out of wheelchair. Several places that I had visited and had him on a waiting list could no longer take him. They said that they could have taken him before and if he had gotten worse while in their care he could have stayed (aging in place), but they can't take them when they are so bad. Luckily, I did find a good one that is taking him. I guess it's true that you really have to place them before you're ready. I didn't want him going to a skilled nursing facility...too expensive and not a family atmosphere that I think he will do well in.
FLglirl, I had forgotten about that. Is it true most faciities want the new resident to be able to "walk in"... I recall that was the word for an Episcopal Home near Houston. Is it true that if they became wheelchair bound or bed bound after admittance, they will continue caring for them?
In most states a patient has to be able to transfer out in case of emergency. Independent ambulation isn't a requirment-just the ability to transfer to a wheel chair. Thereafter the resident is usually allowed to age in place.
With the facilities that I visited, they wanted him to be able to stand to transfer from the bed to the wheelchair. Most places told me to go to a skilled nursing facility with the care that he needs. He cannot get himself from the bed to the wheelchair, but I have to say that he has improved more than I thought he would in the rehab. Now I'm feeling really bad that I have him going to a ALF...I signed the papers today. He still can't stand or walk on his own, but he is getting better at it with support. He can't feel himself much but did manage to get a forkful or 2 from the plate to his mouth. And with the muscle jerks gone, it is easier for him to drink and eat. He is going from the rehab to the memory care unit on Monday...the wheelchair van is going to take him. I get all choked up just thinking about it...not sure how I will do it. He is mentally much sharper than I thought he would be...keeps telling me that he wants to come home and see the dogs. I'm trying to remind myself how difficult it was before he got sick and that he's worse physically than he was, but he is being very sweet and seems more aware. I am so dreading Monday!
FLgirl, I can only imagine how hard this must be for you. It would have been easier if he had declined more but you don't want that. My thoughts will be with you on Monday. Let us know how it goes.
FLgirl......My heart deeply aches for you and what you must face on Monday. I have the papers to sign but have not yet done it and I just don't know if I can. When you posted earlier that you had no choice due to an incident, I envied you since making the decision just because you feel it is time is not easy. But this......whoa.......if he still can express to you how he feels about it, that causes undescribable pain. And the dogs....that chocked me up since they are little caregivers too, whether we know it or not.
Let us know how it went on Monday. I'll be thinking of you all day and wish I could be there to hold your hand.