I went to see dh today. He was eating and started to choke. I have seen this before from him but not like today. He choked to the point that he couldn't catch his breath. He was turning red. gasping. I said to the cna's get the nurse. They just stood there, again I said he can't breath , get the nurse. No movement. I yelled My husband cannot breath, he is choking, get help NOW. They started to move him out of the dining room to the nurses station. He slowly began to catch his breath. All this was going on and his eyes were closed. He didn't open his eyes before choking and after. The nurses said they have never seen anyone go through the stages so fast. They have been there for 12 years. So before when I was wondering about hospice, I guess this answered my question. I never want to see him suffer like this again. So I am going to schedule hospice now.
Paula...you are making a good decision regarding hospice. Hospice doesn't necessarily mean the end. There are cases where they actually improve and go off hospice. Sorry your dh had the choking episode. Maybe a muscle spasm caused it and they will have to change the texture of his food. I know how terrifying it must be for you. May tomorrow be a better day for you.
paula so sorry to hear this. it does happen - you may want to ask the dr to prescribe a softer diet for him now this has happened. it will help him be able to get the foods down with less difficulty hopefully. divvi
Paula, I'm in the same boat as you. DH was aspirating his food. The doctor put him on hospice. All his food is pureed and liquids are thickened. I had told them no feedig tube also. We had discussed that before he was even sick. We both have living wills regarding that. DH is declining fast. He eats very little. Average weight was 154.(He's short) Nolw he weighs 124.
Carolyn, my husband was 170 lbs when he went in there 10 months ago, now he is 135 lbs. His liquids are thickened also, YUK, it looks horrible. no wonder he is loosing weight.
Moorsb, I plan on talking to our elder attorney when all of this is done. The doctor that goes to the home is also on the board. He has the ability to kick any one out at any time. I have to keep my mouth shut so My husband can stay there, where he is finally comfortable with the people. Believe me, after this is over,I will be talking to the attorneys and asking them if I have a case. This blanking doctor had the nerve to tell me to fax any questions to him, and he will fax back the answers.
How crazy is that that they just stood there? I would have gone off on all of them. Were you able to talk with someone about their lack of response Paula? This has been one of the hardest parts of our journey..... Lynn was choking all the time, then they changed him from mechanical soft to puree. Even then he was gagging to the point of vomiting. Not all the time of course... it got much worse when he had the pneumonia. For a while there he was gagging at almost every meal, never on liquids, just the food.
Since the pneumonia cleared up this Spring and he has been on the Marinol he hasn't had one gagging incident. No one can tell me why..... I am just grateful as that was so hard to witness.. talk about feeling helpless...accck!
Does he have any sort of cold that could be making it harder to swallow? Are the foods being pureed well? I personally spoke to the head of the kitchen and we talked for the longest time going over Lynn's menu. He gave me his personal cell phone number in case I ever had a concern. Since then there have been no lumps in any of the food.
As Shirley said, often times Hospice can help improve the quality of life for whatever time they have left. I am glad they will be there to help you and your husband. Keeping you both in my thoughts and prayers Paula ♥
I'm going to do a lot of talking Nikki when this horrible journey is over. Luckily the nurse that has been there for 12 years helped me. My husband was better, but she was concerned about me and this horrible pain I had in my head. I guess this is all getting to me now. He is not sick, but I think when I was feeding him he had the problem when I gave him the cake. It was mixed in milk but I think that was the mistake. He food is puree but they had this cake also for him. I guess I should not have given it to him, but it was on his plate so I thought they knew what they were doing. Another guilt on my plate. I can tell you one thing, I will never help out and feed him again.
Dear sweet Paula, let the guilt go...pretty please ♥ You have enough going on sapping your energy that you do not need to punish yourself with unwarranted guilt. We are doing the very best we can in an impossible situation. We learn by trial and error. I feed Lynn his lunch daily, and it was only during the worst of his choking episodes that I noticed certain food seemed to trigger a gagging reflex. Cakes and cookies were the worst. I think it is the texture. I tried the brownie and about gagged myself! Some foods that are normally really good just suck when they are pureed. After talking with the head of the kitchen, we decided Lynn would get nothing for dessert except for ice cream and pudding.
His drinks never needed to be thickened. It was more the food he had trouble with. A lump in the squash or potato and the textures and thickness of some foods. He also gets a side of gravy with his food so I can thin down the potato as he eats. It gets so thick as it cools, the gravy helps it stay the same creamy consistency.
Please Paula, don't let the guilt get to you. YOU did nothing wrong. If the cake was on his plate you thought you could feed it to him. I am keeping you and your DH in my prayers. You are doing a awesome job!
Paula, quit beating yourself up. My husband choked a lot too and I did not let it stop me from feeding him. It was one of the few things I could do for him. At the end his food was pureed and his liquids thickened and he still choked from time to time. When a feeding tube was mentioned they got a real big NO. I am surprised that there was no nurse on duty in the dining room of your husband's facility. There was always a nurse in the dining room of my husbands facility and another 2 more back the hall to keep an eye on the one's eating in their rooms.
My dh has been choking more lately on his food. I attributed this to the face that he has lost teeth and perhaps he's not chewing his food well enough. But, I think I'm hearing that choking is a common problem as they progress through this disease. Is this correct?
Paula, let the word guilt go. You are doing the best you can and that is good enough. Don't beat yourself up. This is a hard journey we are on and we can't do a good job if we are second guessing ourself. Hugs coming your way and praying for some sunshine in your life.
Hi everyone. I know I didn't do it on purpose , but I did it. I found out today, the milk below should have been mixed with the cake. I gave him the top first, which was straight cake. I am aware that I didn't do it on purpose but if something more would have happened I would never have forgiven myself.
Phranque you made me laugh. I've been reading your blogs because I am at that point exactly. When you made this comment I just couldn't believe how you can come up with being so funny. I wish I had that ability. Your wonderful. Thank you for doing that for me.
I really really appreciate all of you helping me through this. I never thought there could be a group for me. At this point I just need imput so my mind can see all sides. I can drown thinking on my own. Thank you all so very much.
Frank has a gift doesn't he :) I understand what you are saying Paula. The first time Lynn choked when I was feeding him I too felt just horrible. You are allowed to feel whatever you feel, we allow that here. lol It is easy for our thinking to get trapped; we go in circles torturing ourselves. Then we post something that is troubling us and someone here understands... it is a wonderful feeling ♥
Your right Nikki, before I just read now I speak. It's so much better. I can learn from answers to my experiences. That is so much better than just reading. I guess this weekend was a turning point for me. I got a call from the woman from hospice. She told me she will be here for me also. I told her about the mistake I made feeding dh. I also told her the nurse who as been at the facility for 12 years has never seen the disease move so fast as with dh. I explained to this woman that he was always a very strong willed man. He was 9 years older than myself and was my teacher in life. I met him when I was 24. The hospice woman told me from what I said that maybe the progression was his doing. Many people live until love ones come to say goodby, and then they can go. Maybe its the same with dh. He knew at times this was not the way to live and he said to himself when he could think, I don't want to live like this anymore. Maybe that is why the disease moved so quickly through the stages, because of his will. All this happened in one weekend. The doctor telling me he should be on hospice, dh choking and scaring me so much because I saw him suffer, and this woman from hospice telling me what she said.