Yesterday morning the gals at the ALF found my husband on the floor where he had fallen trying to get up. Trip to the ER and he had broken his hip. Surgery the only option besides just letting him be in bed and in pain from now on. Surgery was yesterday afternoon and he has still not come back around to being awake. He is holding himself stiff and shaking so I know he has pain. The surgeon told me today he isn't sure we did the right thing. His mother has Alzheimers so he has special insight. This life is hard.
So sorry to hear such bad news. You had to face a very difficult decision and you did the best you could at the time...please don't second guess yourself. I know this is easy for me to say, but my heart goes out to you....Please keep us posted...we are here for you 24/7.
There was no easy answer but in the end I think you did the right thing..doing nothing would have certainly left your DH in pain..for how long???With the surgery there was the hope that this would help him and I think it will in time...he has post op pain now....so try to look to the better side of your decision...you did what you thought best with all the information you had.
Mimi said it----you did what yo9u thought best with all the inform ation you had.
We just went through this witxh my Mom.
Pain can be managed. There are ways to read his pain without his being able to say the words--stay on them. And don't let them pull one of those "only give every x hours" routines. If they can give patients a pump with a button to release med when they need it at the push of a button they can set up relief for him./
jules, like the others say, you did what was best for him at the time. pain is a deal breaker, hopefully once the post opt is over he will get pain meds and get thru this easier. dont second guess your actions as we do the best choices at the time made. divvi
I agree with the others. There are countless procedures I would opt against, but this one?...I cannot really picture how I would have made a different choice. I think you had to try. Possibly he will not regain much mobility and you will be where you would have been anyway. Or he will, and there will be a slight improvement.
I read this the other day and it had meaning to me. When you are faced with a decision, make the decision as wisely as possible, then forget it. The moment of absolute certainy never arrives.
jules, my heart goes out to you. Bama your words are so true. I recently went through a health problem with my dh which was totally unforeseen and devastating both physically for him and emotionally for me. He went into the hospital with many heart problems that tried to kill him but they sent him home 12 days later on 7 new meds and now he is doing better than before.... but still has dementia. I was not ready to make such decisions (in our 50's) but did the best I could. Have done major research during and since but the bottom line is they need to be comfortable and we have to help them live with dignity. The only thing that can cure his heart long-term is a transplant... is he a candidate for that? Well I don't have to answer that at this time but we probably all know the answer to that. I think Bama said it best ....
Jules, what a heartless SOB that surgeon is! Had you made the decision not to proceed with surgery, you'd be tearing yourself apart watching him writhe in pain in bed. You were in a no win situation and your instinct combinded with the information available to you was what you had to work with. Note this surgeon's attack of guilt, conscience or insight due to his mother having AD appeared only after the procedure and after your provider being billed after his services.
Jules, it doesn't matter if the surgeon thinks he did the right thing or not. You know you did what was best for him and we all know that, too. Keep doing what you are doing. You are his voice. Just because our loved ones have diminished comprehension does not mean they don't feel pain. Mine is actually more prone to feeling pain than he ever was before this disease. I think when they are confined to their very small worlds that the things in those worlds are magnified. At least that is how it is with Lloyd.
Thanks to all you folks, you are my peeps! The continual second guessing of myself is so relentlessly grueling and you all know how it is. My heart hurts today but it feels love as well. I know my motivation is to do what is best for Marv, and me, and the rest is all just somebody else's opinion. They don't have to live with it like I do. Nor do they know the whole picture. And now I will head back to the hospital.
Jules I agree with everyone else. When you are faced with a decision that you have to make in a hurry you have to go with your “gut” & you did. Like Bama said, now let it go. I'll pray that you find some peace.
Yuck, whatta situation . . . . but like everything in life that crossroads is now past. Dont second guess, it aint worth the stress.
(Hummmm . . . . what if I had never married my wife? Maybe I would not be dealing with AD right now? Hummmmmm . . . )
For the rest of us, the ONLY thing that can posssibly be of help is to try to make as many of these decisions well before they are needed.
No, this is not always possible but along with all the other things we have to think about, perhaps if we participated in a little "What if?" discussions (even in our own heads) then PERHAPS when we are faced with it, that decision might be a tiny bit easier. What if they need a feeding tube? What if they need major surgery? What if a cancerous growth is found? What if a pneumonia is bad enough that a breathing tube and ventilator (maybe ICU care) is suggested?
Have you EVER talked about these things with your spouse? Maybe/hopefully well before the AD ever appeared? When a doctor gives you some major news and then wants a quick decision is not the time you want to have to think about it.
And to make it worse who knows where our AD folks are going to end up under healh care reform and how will it will affect the choices we are offered . . . . ? Future choices could wind up being very limited. Scary indeed . . .
Jim: Fresh from a visit with an Elder Law attorney redoing wills, poa, directives etc. In addition to having your aforementioned discussion with your spouse, that very same discussion must be conducted with our children or whom ever will be responsible for carring out our wishes. We are chatting here because our.spouses will not be capable of carrying out our wishes Our children could very well be faced with the same need for a decision as Jules faced. They now know every detail of our end of life wishes and hopefully we have removed any question of our wishes from their minds
Marty - this is what every caring parent should do. Take the burden off of your children, they have enough to deal with if they also have to make such decisions for you. Even so, they will 2nd guess - that's what we all do, Jules. You did the right thing. Did anyone here say otherwise? --and we're the ones who know. The doc is human, he has his own demons and 2nd guessing for you & thinking of his Mom, he has burdens. Let it be Jules, let it be. Sleep well.
Still just sleeping and nothing in his eyes when I can roust him for eating and juice. Hopefully tomorrow will show some improvement and we can get on with the next thing which is a move to the nursing home for rehab and hopefully eventually he could have his mobility back at least some. I'm so tired I could sleep for a week,.....that is if I could sleep.
Oh Jules, how tired you must be! It is not just physically draining but emotionally as well. I do hope you can stop second guessing yourself and let go of the guilt. When you do what you feel is right in your heart, it is never the wrong choice. Anything done in love is always the right choice! It takes our loved ones longer to rebound, I hope your DH starts feeling better very soon. In the meantime, please get some rest. Hard I know, but very necessary. ((hugs))
I think it isn't the physically tired that is hard. My brain just won't work right. We moved to the nursing home and as we were getting him settled I asked what we had for pain. I could tell the tramadol was wearing off. The nurse said nothing. What? Well she said we have an order for a patch but we don't have any. My brain just short circuited out. I didn't know what to do. Well, I know he has an order for ibuprofen which is as needed. That would be something. She said she would see once she had some other stuff taken care of. He was sleeping but kind of groaning with each breath, like anyone would do after surgery and no pain killer to speak of on board. I thought I would go home and see what I had that I could give him. I had only Aleve. I tried to call the home and see if anything had been done but no answer, after hours. So it's ten thirty and I'm sick of the thought he has nothing so I drive back over ready to raise hell. The nurse sees me coming through the door and I can tell she knows. She immediately says I just got that patch on him and I need to get some oxygen on him since he is low. I checked and he hadn't even moved since I left but he was wet clear through. I said we need to change him and move him. She had another gal come and everyone started jumping around doing things. Got some oxygen on him and raised the head of the bed up. Finally I felt like I had done all I could do and I just laid my head down on his shoulder and cried like a baby. Then I had to go home. Today doesn't look much better. Must be the downhill from here part.
Jules, I'm so sorry you are having to go through this. I had the same problems when my husband was in a care facility. It was one the worst things about the disease, the lack of care and concern. At the time, I fought like a tiger for better care (we can't be there 24 hours day), and in time, it did improve. I understand that this lack of good care is world-wide: there are probably multiple factors, but that understanding doesn't help when it's your loved one who is suffering. You're both in my prayers, mate.
Jules - I can only commiserate, I remember being so tired I thought I'd drop in my tracks. For the most part, DH got good care, but sometimes you just have to be there--let them see your face and you're doing your best. I think most staff are about as caring as they can be but also overloaded. So the squeaky oil gets greased. I wish it were otherwise, but so far I don't see a lot of changes for those w/AD or thousands of others who need constant care. I cannot send you 'ease' just a little 'perk-up,' so you know that others know and support all that you are doing.
How I wish we were closer!!! This breaks my heart and pisses me off at the same time, a dangerous mix. Good for you for being prepared to raise hell, sometimes that is exactly what you have to do. Honestly, what concerns me the most Jules is this is how they treated your husband on his first day there. Normally they are all over you the first day, weeks. Then later you notice things starting to slide a little, and then we have to raise hell to make sure they don't again.
The patch not being right on hand I can kinda of understand, as long as it was going to be provided very soon!! And it seems it was? But another thing that concerns me is the nurse’s lack of concern for your husband being in pain. I know how difficult it is for a peaceful, kind hearted person to have to be a bitch, but that is what we must do sometimes. Don't ask, demand.
When she said she would get to it after she got her other stuff taken care of... that is when you say,….No, you will take care of it now or we can go talk with your supervisor together.
Do not settle for less quality care than your husband deserves and needs. He is there to get the BEST quality care possible, hold them to that promise.
I see you have “the look” down! Kudos : ) This will get you a lot done without having to utter a word. Welcome to the family of “Mamma Bears” .. It’s so very hard, we know and understand. ((hugs))
Also Jules I would talk with someone in high authority about you calling for hours and not being able to get through to anyone!! That is completely unacceptable!!
Nikki's right. I have no problem clearing up who is in charge when Lloyd goes to the ER or the doctor. And when I went to complain at the hospital after Lloyd's terrible ordeal in the ER in 2011, I took my sister-in-law with me. She backed me up and was there to hear everything that was said. Intimidate if you must!
Today my sister called to see how I was doing and even though I tried to be cool she knew I had hit the wall. An hour later as I was at the home with my husband she called and said how do I get in there. She had jumped in her car and drove to be there for me. We both went in and talked to the charge nurse and told her how we felt and what our expectations and hopes were regarding his care and eventual rehab to move back to assisted living if possible. Finally someone listened and said they would try to meet those goals. And addressed his pain. He was awake today but very confused and now agitated. It is true that just because you place your loved one, the job is not done. You don't get to walk away and go to Disneyland or the Bahamas. We just carry on like good soldiers. Thanks everyone for your caring input and hugs. With your help I'm growing a set and I'm prepared to use them.
You Go Girl!!!! You are doing wonderful ♥ Please tell you sister for me that I think she is simply awesome! So very glad she came with you today. Is nice to feel someone has our back now and again.
Over a year ago they were going through a major addition where Lynn is and to accommodate the new residents in the addition they took some of the aides from Lynn's floor, leaving them short handed. Very short handed! It got so bad I almost had to transfer Lynn.
My sister and my then 12 year old niece came to his emergency care plan meeting with me, I appreciated their support a great deal. But it is my niece who still stands out in my memory, she dearly loves Lynn and she was as a mad as I have ever seen a 12 year old! Lord but she was a sight to see.. red hair billowing behind her as she flounced in there with determination and purpose. She told them politely, but with authority that her Uncle was there because we love him and trusted them to give him the best care possible. She then said “ you have broken that trust, what do you plan to do about it?!” I will never forget that particular day LOL
I am glad you had this meeting Jules, it is one that should have taken place before your husband was even placed or at the very least the day of placement. Make sure you are talking to the right people, every facility has to have a “chain of command” posted. But your best starting point for serious complaints is always the DON (director of nursing) they are the ones in charge of all the aides and nurses, and their supervisors.
I am so relieved to hear his pain is being properly addressed. I know that must be a huge relief for you! I hope you are able to get a little rest now. And lol, nope! Been over three years for me and I still haven’t taken a vacation, not even a weekend trip. I do feel complete confidence in the facility to care for Lynn.. But, at this stage in the game I need our daily visits just as much as he does. Plus, I need to keep my Eagle eyes in view for all to see <smiles>
Good work Jules! No matter how good a facility is they need to know, as Nikki would say, Mamma Bear is watching. As the anesthesia takes a while to clear it is difficult to see what his baseline will be. The goal right now is to make sure he is pain free. As for second guessing your decision, hope you are over that. When you calm down...and have time...talking to the surgeon about his comment would be helpful to him and for future patients and families. Don't think he was being mean but he was insensitive. You are doing a great job and deserve a medal for going in the first night!!! As for growing a set...think you have them and they just needed exercise!!
Yes good job Jules, I ditto everything Nikki said. The staff needs to recognize you when you walk in and start moving to make sure that everything is in order. I even told one sloth that they needed to know when my car entered the lot that "Eagle Eye" is here, go check on her nest"!!!!!!! So many staff members get lulled into thinking that half-stepping is good enough!! I am glad that he is resting better now.
Today the manager at the ALF and one of the long term caregivers came to visit my husband in the nursing home. They saw that he needed to be changed and his fleece sweat pants were too warm for the 90 degree weather. They helped get him up, on the toilet to change him, washed him up good. got new things on and back to lay him down so he could take a nap. These people did not have to come do this or visit. They are the angels I found two years ago to help me and I told them how grateful I was to have the two quality years they had given us. We sometimes are fortunate to meet the best people in this money producing industry which is health care for the elderly. Sometimes we also meet those not worth the powder to blown them to H@(l. I'm afraid I'm heavy on the latter but the good ones truly make the difference.
Jules...you are so right. Today the hospice aide came to give my dh a shower. She is usually very good about doing all the things she is suppose to do, but not today....she didn't shave him or have him brush his teeth.
I will give her a pass this once, but will say something if it continues. It is hot here and she said her air went out in her car so maybe she was just done in.
JudithKB, hon you are being too nice to her. If the air in her car does her in, what happens when your dh has a bad day? I used to give them passes in the early days, but they seemed to see that as a sign of weakness on my part or they sensed that I had reached the point of thinking that just getting by was enough. NO MORE.... too much water under the bridge. I pay for caring hands and that is what I expect from them. sorry about the preaching but this is a real sore topic for me. It just like when the kids were small and I left them at daycare expecting them to be treated with care and dignity and would settle for no less.
You are right. And, thanks for your comments. I will mention it tomorrow. No pass. I am hot and tried also.
I just finished shaving him myself and he said that made him feel better. He is having a bad day today...seems very weak and his blood pressure is low. The dr. had reduced his blood pressure meds. to just once a day instead of twice a day. It seems to raise his blood pressure a little bit for a week and now it is back down. I took it several times to be sure it was right. 96/67.....it had been avg. 109/76 for the past week.
My 90 yr. sister is in ALF and I have no complaints so far. But I was a little ticked when I got a letter saying if I had any issues the manager would speak to me the 2nd Wednesday evening of the month. Oh yeah, I thought if there are issues I will speak RIGHT THEN. What a dumb letter it was to my way of thinking.
I busted him out of the nursing home! He wasn't making any progress and just being left to sit in a wheelchair all day. Not even laid down for a nap. Can you imagine after hip surgery not being able to lay down? I took him out and back to the assisted living on tuesday. The gals have been encouraging him to stand and walk with help each day since tuesday when we moved him. Last night he just decided he had sat in that wheelchair long enough and he got up by himself and started walking. Pretty unsteady but he hasn't stopped since. He even danced a little to the lawrence welk show with one of the gals. I bet you can imagine how happy this makes me. I know it may be shortlived but for the moment we celebrate!
jules what good news. sometimes we have to intervene and make hard decisions like this one. and it works for us.! good for you and happy to hear of his successful recouperation- divvi
As I said before, the celebration was shortlived. We did the move to the new home since ours was closing and now he is slipping away. I think the only reason he is still here is for me. I wonder if I'm being selfish in my mad struggle to keep him waking and eating and walking and forcing him to know who I am. Is it time to step back and tell him it is okay if he is tired of fighting. This is a difficult place to be, as are all the places in this process. I just don't want to force my desires on him to stay here for me. I don't think the caregivers at the new place will be terrribly diligent about making him drink or eat, but is that okay now? Maybe it is okay to just quietly slip away. I don't know what to do at this point.
Bless you. What terribly hard questions you are having to answer. Maybe your brain is telling you things that your heart is not quite ready to hear. But whatever decision you make out of love for your husband is the right decision.
You are in my thoughts and prayers. Please keep us posted.
Dear Jules, this is a tough time for you, and I'm sorry. I tried it both ways, fighting for DH's life and then, later, deciding to let him go. I had told him it was all right if he wanted to go - not sure if it registered with him. But since he was choking, in distress and pain, I knew he wanted it all to end. That's what he said to me at the end, "Mary, let's get out of here." All our efforts were directed to keeping him comfortable. My conclusion is that it doesn't really matter. It's going to run its course at its own pace, and there is really nothing anyone can do. You'll be so tune with him that you'll know what to do better than anyone, and don't second guess yourself; it's out of your hands and in God's.
Somewhat different, but when my mother-in-law was dying her daughters told her it was OK to go and that they would take care of dad (her husband). They said she seemed to relax some. She did die a few days later.
I think it is OK to tell him that he can go. I can't comment about struggling to make him eat and walk and recognize you. I hospice nurse should be able to help you with these issues.
A young relative of mine was with her father at the end. He was in a hospice facility and I think they must have given her clues as to what to say. She told him it was all right to let go and finally, at the end told him, "It's time to go." And he did.