It has been a while since I last posted. My DH is going down very fast. He has LBD (Lewy Body Dementia). They say all of the dementias end up following the same pattern, so I am hoping my question will cast a wider net and some helpful guidance. As you all know, no one understands ANY of the dementias even half as well as the caregivers. So ... I am coming to you, my friends with LOs on this journey.
Here's what is happening: 1 week ago, my DH was completely non-responsive for over 3 hours. He snapped out of it, but seemed to have declined overall afterward. This last Friday morning at around 4 AM, my DH became completely non-responsive for over 14 hours. (I did manage to get his morning medicine down him by raising the head of the hospital bed, putting a cold wet cloth on his head and face, straddling him and giving him his meds 1 or 2 at a time and then urging, prodding, and, admittedly, nearly causing him to choke - a method I will not be using again in the future. When the nurse aide came to bathe him, she showed me how to put on diapers, move him in bed, etc. During that time he was confused and mostly non-responsive except for rolling eyes and trying to do things that did not make sense.
We are on hospice and they were going to start 24 hour care. Of course, less than 30 minutes before the nurse arrived (actually, about 5 minutes), my DH suddenly snapped out of it. He wanted to sit on the Lazyboy Rocker/Recliner in the living room. He stayed awake (mostly, but was even more cognitively declined) for about 3 1/2 to 4 hours. Then, again, he became completely non-responsive. My son, who is strong, was able to pick up my husband (230 lbs) with my help and my daughter's help and we got my DH back to bed. He did not wake up or even open his eyes during this entire ordeal. He remained non-response from around 10 pm until 5 am, when he woke up when I gave him his liquid pain medicine.
He was awake and very very confused at 7 AM and was trying to climb out of bed. I calmed him down and got him back to sleep. Again, around 11 am today he became non-responsive for over 2 hours. He woke up when my son (in my absence - I went to a store) basically tried to pry my DH's mouth open to give him atropine to reduce congestion because he was gurgling again. He now knows not to do that, but my DH has been awake, but more confused than usual (a LOT more confusing and unrelated statements).
Has anyone had any similar experiences. It feels like we are getting to the end. I have seen my DH on way too much medicine in the past ... when the medicine they had given him knocked him out in his chair to the point where he was drooling. Even then, I could get him to respond, to wake up, and walk with assistance to his bed. I firmly believe that my DH's current state is NOT related to the medicines (he has been on most of them for well over 18 months ... many in much higher doses).
Please help me understand what is happening.
Lost in the dark and hoping for some light or some understanding.
Oh, Sharan. You must be frantic. I happened to be reading the new posts and saw yours. I wish I could help you but I, fortunately, am not where you are as a caregiver, so I'm afraid I can't help you. Just know I'm thinking of you and hoping that someone who has more experience will see this and give you some help. Prayers for you.
Sharan, I am not at that stage in my caregiving roll either but I also will be praying for you and your husband tonight. There will definitely be someone coming along that can be more informative to you. Just know that we will all be praying for you.
Sharan I am at your stage. I assume hospice is with you. I am surprised that they haven't given your husband topical medication to replace the oral ones. they have gels for just about everything. My husband sometimes chokes on his own saliva. On the rare occasions that he is somewhat alert we give him pureed foods and thickened liquids. We will let nature take it's course.
Sharan, I know what you're going through. It does sound like it's nearing the end, I'm sorry you're going through it. My DH passed away one year ago next month. I always got him out of bed, with the help of a hoyer lift, and put him in his reclining wheelchair. I put him in bed one night and he went to sleep right away, the next morning I kept checking on him but he didn't wake up. Even when the hospice aide came the next afternoon he roused up enough to ask me who was behind him, I told him I had to change him, he said ok and went back to sleep until the following evening. At that time he woke up, ate a good dinner, went back to sleep. He passed away two hours later. I think they just become so tired of the struggle they are going through. You mentioned hospice and your son picking you DH up to put him into bed. Ask hospice if you could get a lift to help with this, it makes it so much easier for you to transfer him. Also, my DH was only on meds to help with agitation, I saw no reason to even give these meds when he wasn't responsive. The only thing I would have given him would have been pain med which is in liquid form and can be given with a dropper. You can watch his eye movements to see when he is in pain even when he's sleeping.
I don't know if any of this helps, but I do understand what you're going through. Stay with him and keep talking to him even if he doesn't respond. I didn't know what was going on when this happened and figured he would just wake up like he always had. He did have sleeping periods where he would sleep all day, but I could always get some response, but the last time I look back and see that it was different than the other times
Thank you all so much for your support and information. As Joyce mentioned, my DH has slept all day before but this is very different. He has LBD, which has large swings. So, with his moving from a complete non-responsive state (moving him, hearing the telephone ring, talking to him, having long conversations around him, jostling him, telling him I love him - nothing wakes him) and then, suddenly, he wakes up (more confused than in the past and wavering between awake and very groggy) ... it seems like this is the path to the end and one of these times (who knows which), he will not wake up. Our overall feeling is that this is the time. Remarkably, I am at peace with it ... for now.
I keep telling my DH (Mike) that is ok to rest, it's ok to let go,and I keep reminding him that he will be going to be with God. He described his experience with feeling God's presence. He said he felt light - light as in no negativity and no burdens; love - love and forgiveness; acceptance - complete acceptance; and peace - an overcoming peace where peace overcomes everything else and there's nothing but just peace. Every time I think of him passing from this world to the next, I think of his description of what it feels like to him to be in the presence of God and God grants me peace.
My DH is in pain, a lot of pain, from the Parkinsonism symptoms that come with LBD (many many muscle spasms in his legs, feet, and arms) and cervical disc degeneration from C2 to C7 that is made much worse with the involuntary neck and body jerks. In fact, based on the large muscle spasm he has in his back left shoulder, it looks like the C6-C7 graft may be failing (the spasm is in the same place where it was before the graft).
Sadly, he is very aware of what is happening and that he is confused. I wish he had the gift of agnosia that so many dementia patients get, but then he wouldn't remember me and our family. So ... I wish one way and then wish the other.
Thank you for your loving support and understanding.
I don't know what medicine you are giving him but I went to crushing most pills and feeding them to him with a little spoonful of grape jelly. She really like that and it was so easy. I did not have a crusher, so I just the pill(s) in a baggie and crushed them with a hammer. She thought that was funny.
I amglad he is felling the prescence of God. I think it makes this whole ordeal better for both you and him. Love, bill
Dear Sharan, I think what Joyce said about them just getting so tired from fighting the disease, they just wear out. Jim has Motor Neuron Variant of FTD. The symptoms are very much like ALS. He is aware of his decline, although lately less so. I wish I had some wise words to comfort you. All I can say it that I know you are doing the very best that You can do. He is so lucky to have you. Keep in touch. We care. Arms around, Susan
As far as crushing the medicine, it sounds like a good idea (except for time released meds, of course). However, my DH becomes so deep into unconsciousness that his teeth are clenched like a vice and none of the reasonable efforts (touching his chin in a downward motion, pressing lightly on the muscle on the back of the jaw) work. That's how deep he is going.
Sharan, I also think it sounds like he is near the end. I had much of the same issues here with my Mom and my DH. Hospice should give you morphine for his pain and I would just let him rest and sleep. I stopped other meds at this point unless they were the comfort meds Hospice provides. Choking can become an issue. I believe this is natures way of ending things.
I agree with lmohr. I would stop all meds except for morphine and anything else required for comfort. Ask your hospice about installing a sub-Q port (often in the thigh). One quick poke to get it in and then you inject the morphine and any other meds required into the port. You can inject it while they are sleeping and they stay comfortable.
You may find he becomes more responsive for a small period of time after they get his pain level down. Pain alone can cause the shut down you describe.
I wish you strength and peace at this difficult time.
Sharon, I too, think the end is near, and that the coma-like sleep is nature's way of his body shutting down because of the lost connection with the brain. My thoughts and prayers are for you both, because I've been through this just recently, and I know what pain and loss you will feel, even though your DH will be pain-free, whole, and in God's loving arms. May God give you the strength and comfort you need.
Thank you all for your loving support and confirmation of what I feel. The only non-comfort med that he is on is Namenda and I am stopping it today. I cannot do anything that will prolong his emotional and physical agony. I feel his pain. And he is so worried about me! Isn't that amazing!?! Last night, he felt God's presence and felt God letting him know that everything is going to be ok. He also saw 2 angels in his room. Thank God for His grace!
My heart is breaking at the thought of this life without my DH, but it is also breaking because of the emotional and physical pain I can see and feel that he feels.
You are all so awesome! Thank you so much for being here!
Sharan, May God Bless you for all that you are going thru. You are so strong and loving. In your time of pain you still find time to share. I am praying peace for you and your dh. It must be glorious for your dh to know God is there with peace and love waiting for him. Even in this time God is giving you peace thru your dh's sharing of his experiences. Good night and God Bless You as he keeps you in his loving embrace.
Thank you all for your prayers and support. My DH has been in a deep sleep all day today. He has only woken up to take his medicine and then he went back to sleep. When I asked him if he needed anything, he said all he wanted was for me to lay down next to him (which I was doing). Each time he comes up for air, I just keep telling him that I love him and am here for him.
I am taking short term disability at work. This will mean a pay cut (a serious pay cut), but God will provide.
Dear Lord please let Sharan feel your comfort and arms around her as she keeps her arms around Mike. Please spread your warmth and peace over each of them as they spend these last days together.
I am sorry all for not responding sooner. My DH was alternating among fogged lucidity, deep coma-like states, and deep deep sleep for over a week. The neurologist said he had seen patients like my DH and that he was having seizure-like events. God called my DH home on January 31, 2010 while he was cradled in my arms singing "Amazing Grace" and "One Day Jesus [will call my name; as days go by, I hope I don't stay the same; I want to get soooo close to Him, there's no big change on that day that Jesus calls my name]." The funeral was on February 3rd. So much to do because he was only 52 and we had not made arrangements. God helped both directly and by and through family and friends. My DH is no longer in pain, he no longer has jolting or lightening-like forces torturing his body, and he is now whole and complete and rejoicing in heaven. As for me, I am still very much in a fog, but I am holding tightly onto God and trusting God to help me find the way out of this fog and into the life He has planned.
Sharan, I am so sorry for your loss but I know God is with you and will be through all your pain. You know your husband is well and whole again and I hope it brings you comfort. God Bless.