Took my dh to the neuro today and I told him all the news about my dh going down hill this past week and about hospice being with us. I asked him if he thought this was the beginning of the end...and he said YES...I said "how long do you think he has..a year, two years or what??". " He replied.. "a year" Then I said..."do you mean six months" and he replied..."I never say less then a year unless I am confident of the time frame and with AD you are never confident with the time frame". But, he is in stage 3 on the 3 scale or stage 7 on the 7 stage scale. Last stage regardless how you look at it.
Then after coming home the hospice nurse came....Report: Hd's feet and ankles were swollen and a little blue...his breathing was shallow, his pluse was low and he was having trouble swallowing...I ask her how long the hospice would be here.....She said "We are here now for the duration" And, I said you mean until he dies...and she said "yes". She said I am ordering a hospital bed, oxygen and some type of suction thing. She also ordered 4 new meds. for emergency problems. I was so stunned, I forgot to ask her what emergency??
I was so frightened I was afraid to ask what did all this mean?? Of course I know what it means..but, does this mean he only has maybe a few months or what?? I was in total shock when she left. Then I say to myself ...how could I be in total shock when this was my feeling of his condition for the past week or two....
Oh Judith...you are shocked by the reality of your situation. We can all talk about the end of our journey but when the time comes I am sure I will be in shock too. Prayers for you and your husband.
I'm sorry that you are in the midst of this because it is surely a difficult time. The most important thing I can say is to pace yourself and make sure you get enough food and rest. Stop before you become exhausted because it can be a long haul, and you need to survive. You are both in my thoughts, heart and prayers.
I agree with scs and mary. You are shocked by the reality of your situation and you have every right to be because even though we understand we have to put it aside until it kicks us in the teeth again.
And watch what you're doing especially around knives, electricity, and cars right now. Shock is shock and it's clear that you have it. I'm very sorry.
They don't know. Nobody knows. If they knew something was going to happen soon they would have said what the specific thing is they know. They know he doesn't have much more than a year and possibly less. That is said about everyone in the last stage which my wife is in also.
I've been in four meetings where our family was called because mom or dad were dying and they didn't. One of those meetings was in the 1980's but dad tried to walk out of the hospital three days after getting a pig's aorta put into his heart. Another was ten years later when they had to take it out and put in an artificial aorta and again he tried to walk out within days. My mother was in a coma ten years ago and was in critical care for a month which is unheard of. They told my sister and I she was in her last days. We walked up to her and told her loudly that if she didn't get up she was going to die in here because the doctors had just told us so. The very next day she came out of her coma with a ravenous appetite. The hospital called her their miracle patient but mom heard us and didn't want to die. The last time it was true.
No one knows in this situation. I'm in the same boat. Get your funeral arrangements made Mr Wolf they say. Not a chance. I'm feeding her bananas. She was always bananas about them and still is. I already know I won't use anywhere I will be driving by all the time and I won't be going back so I can pick up the phone then just as well.
Hang in there Judith. They don't know when we meet our maker anymore than we do. And your doctor isn't confident enough to say less than a year, so it could just as easily be more. My wife has been stage 7 for some time and while they're telling me to prepare, she is gaining weight finally.
My mom's kidneys were failing and they gave her 2 weeks to live. She lasted 10 days. It was what she wanted. I swear she knew that kidney failure was about as painless a way to go that there was. It was her plan. I crawled in bed next to her at the NH and was there when she went. I told her it was ok to go and that we would be alright. I told her Grandma was looking for her and if she saw her, she should go with her. It was hard, but it was the best thing for her. They gave her 2 sublingual doses of morphine and she was gone. With our spouses, it is so hard to let go. In our hearts we know release from this disease is the best thing, but that doesn't keep our hearts from breaking. Every time Lloyd has another bad spell, I tell them to let him go if it comes to that and I cry every time that I say it. {{{Hugs}}} to you Judith and prayers. We all are here thinking of you.
Judith, I am so sorry you are going through this difficult and devastating time. You are in shock...as others have said we are never prepared to hear the end is near, even when we tell ourselves it is. There is something so shocking when a medical professional puts our worst fears into words. My thoughts and prayers are with you both during this difficult stage of the journey.
Judith I'm sure your emotions are all over the place. I remember being in panic mode even though I was expecting it. Along with hospice we will be here with and for you.
Thank you every one. Today I am so sad...soooooo sad. Blue...could you explain this to me? I thought hospice came for a certain amount of time...like six months or some given time and that could be renewed if needed. Today, I don't understand why that hospice nurse would say: "We are here for the duration"... Does that mean it probably is less then six months and they are just letting me down slowly...telling me the duration when they know the term "duration" is probably six months or less." This is what I am thinking.
I know the mind does crazy thinking at this time...but, I want to know...am I wrong to be thinking they think it is six months or less??
JudithKB--Hopice will be there for as long as it takes. Your DH's condition warrant their care whether it takes 2 months, 6 months, 10 or more.
Hospice has re-enrolled my DH, even though the Dr.said "Maybe a year", but it's because he's now on Palliative Care. There will be no surgery for his new(2nd) Terminal condition.
When DH and I began our adventure in Dementia Land, we were told what Dementia he has, what it does, and that it’s TERMINAL. DH doesn’t remember but I do, hearing the words, knowing their meaning, but not really having a clue how destructive and dangerous it would be for me—the Caregiver. Generally, the Dementias progress slowly—at least a few years. I accepted what we were told, that it would take time. Terminal for Dementia is --NOT NOW, NOT YET. We take care of our LO, adjust to the behaviors, the work, the declines, but they are still with us—NOT NOW, NOT YET. This is dangerous for the Caregiver because we become so involved in the caregiving, we wear ourselves out physically, become worn out mentally, and weakened spiritually . If we don’t make serious efforts to take care of ourselves, the Dementia can take us too. We postpone really preparing for the end because it is NOT NOW, NOT YET.
In January DH was placed and I had to make that huge adjustment. Still his Caregiver, but he wasn’t with me any longer. My 24/7 routine was blown to smithereens. I was now alone. He was gone, but not GONE. I’ve been setting up a new routine, with less help and more chores back on me. The opened up time has let me start doing more for myself. I had thought I was prepared for the loss(grief) related to Placement. Wrong. I knew the words but had no idea how devastating it would be. And still I was preparing for eventually losing him, just NOT NOW, NOT YET. Dealing with the Placement grief made me realize I need to use this time to prepare for the ending as much as I can, but it is still down the road—NOT NOW, NOT YET.
Things changed and now it’s harder. The new Dx, CHF is caused by Aortic Stenosis and it’s bad—about as bad as it can be. Open Heart Surgery, on the Heart/Lung machine—4-5 hours could fix it, and drive his Dementia to the end, or even take him on the table—no surgery. DH was told—he doesn”t get it. Luckily he is generally cooperative, but he can’t really help himself. Twice already, he’s called me on the phone to have me call the nurse for him, because he’s forgotten about his call button. This will take him SOON. We may have a year. He’ll weaken, fade and die—most likely peacefully—SOON. It will be hard to watch this very visible decline—already is and it’s only been a couple weeks since the refined Dx. Going easily will be a blessing over lingering through a Dementia Death, as so many do, but SOON is hard to adjust to.
There is a 3rd kind of Death-- the immediate one—accident, Heart Attack, etc. It is NOW. You aren’t prepared at all—just smashed down by it. You go into shock, emotionally ripped open. It is NOW. It hurts bad. But you aren’t worn down, emotionally bruised or scarred like with a SOON or a NOT NOW, NOT YET.
Oh God carosi your post is over the top awesome, I am sorry for your deep pain but what an awesome post. Dear Judith how hard it is that you have to go through this. Oh now my heart aches for you all, and for us too.
And I understand but you are asking so - yes you are wrong in choosing the worst fears. You have no basis so it is the fears that are thinking.
You are ignoring that the doctor was unwilling to say less than a year because he had nothing specific to say that with. He is probably your best source of accurate information.
Hospice saying they are here for the duration is their way of comforting you to let you know that you will have their help until your husband's time really is here.
But the real issue I think Judith is that all this is hitting you now and you need to step back just a bit as much as you can and get some sleeps in. A few days to sort through this will probably help you but I repeat that what I hear is shock.
Can you get your physician to phone you or talk to him and tell him what you're going through right now? That this has hit you hard and can the two of you talk a bit about it? He will repeat what he said because that's his best advice; but, he will be more aware of you and what you're going through.
My best advice is to keep talking here or with a good relation or friend. There's a wall of pain inside against which you've had to endure and we all have to help each other get through the monster spots because most all of it is already very tough.
Oh Dear Judith, my heart breaks for you. With all the frustration we go through during the different stages I know that when I am where you are now I will also be so sad. Like others have said, we will be here for you. Try to take care of yourself too.
Linda Mc, your story about your Mom brought tears to my eyes. I've heard that sometimes people won't pass until someone tells them that it is alright to go. I'm sure it was comforting for your Mom to feel you next to her & then she just fell asleep. You made it OK for her to leave, but like you said, it didn't make it any easier.
Oh, Judith. I have just been there. You know it's been coming, and yet when it does you are totally shocked. You can't know how long these stages can last. Even though we know this is a fatal disease, we just can't make ourselves believe it. Then it comes. We are all here to help. Please accept our hugs.
Judith-others have answered your questions well. I will be here with you. Hospice needs to recert their patients from time to time to satisfy MC that their care is still needed.
Judith, I just want to send my wishes to you and let you know that I care.
It sounds like Hospice is a little different everywhere. My husband was in an alf that was palliative care only but not everyone there was on Hospice. From hospital to snf to alf there were dances with insurance coverage that had to be done. So, he was discharged from hospital with a referral to Hospice. I don't know if there are differing levels of Hospice but I was specifically told end stage or final stage on a FTD basis as he was never staged for AD.
For him the certification was for up to six months but I was told that recertification at six months was pretty routine. I got the impression that keeping patients was a priority and patients and families were not just left without services.
Judith, I can so relate to how you are feeling. Before placing my dh he had a bad spell. He went down to breathing badly, not being able to walk, moaning, and lossing the use of his right side in less than 36 hours. Hospice ordered oxygen, the hospital bed, a suctioner, and increased meds. After about 4 - 5 days of this he started bleeding from his penis. It was a kidney stone that caused all this trouble. But the point is that when I saw him decline so rapidly, and how concerned Hospice was it scared the sssssss out of me. I also thought I was prepared. I was not and am still not prepared. I am knowledgable about what is happening and what will happen but no I am not prepared. I feel your pain, I understand your fright, and I do believe what has been said above about you being in shock. Having survived this ordeal and realizing just how not prepared I was I can say cry, scream, hit, do whatever you need to do but don't read more into it than you have it. It is too exhausting to you. It takes away from what you are and can be to your dear one. I am not trying to be mean so please don't think that, just know that it is so scary we tend to see danger all around us. Our Hospice Service will be with my dh even since he has been placed, as long as he lives. If it is six months or six years so don't let that scare you. Just know all of us are here for you and understand. I am so sorry this is happening. Prayers are going up for you,,,,,, and hugs are arriving on the wings of the angels that are watching over you...... take care sweet Judith....
((Judith)) It is always so hard to receive such news. It is shocking and I agree with Wolf and the others, you are in shock. I also think it would be a good idea for you to sit down with you doctor and hospice and explain to them that you need to know more specifics. I do believe your doctor was being as honest as he can be. The truth is, they just do not know.
I remember the first time I heard hospice how great was my panic. The same thing happened the first time I was told Lynn was in end stage. But, end stage can last for years…there is no clear cut answer. Only God knows for sure.
I do understand your want to know, your need to be prepared…but Judith, this is one thing we have no control over. And even if we think we are prepared, we never truly are. My heart goes out to you, know that we are here to help you.. Keep talking, we care ((hugs))