I was told it was time to get Hospice involved with Kathryn's care and had my first meeting with Hospice this morning at 9:00. They placed her at stage six and advised me to have her enrolled in their call back list. I asked them if they could give me a timeline of how this would work and they said that while nobody could provide an exact timeline that judging by her age, History and speed of decline they thought she need to be in Hospice nursing care within one to five months. I asked them what did I need to know for the future for Kathryn and then I heard the word death mentioned for the first time. At that time I about broke down and cried. My chest hurt and I really felt like I couldn’t breathe. I have never felt that kind of pain before. They did say that once she came into Hospice she more than likely not be aware of what was going on and would not have much if any pain they were very good at pain management. They did say that she could plateau again and hold a while but that is not normally the case at this point for someone her age and with her history. Here is the list: 1. Does not our address or phone number. 2. Does remember how to answer the phone. 3. Can not prepare anything to eat. But does eat with no problem. 4. Trouble telling the time. 5. Can tell you what day it is or date. 6. Can’t remember 1 minute ago. 7. Puts things where they are safe and never to be seen again. 8. Can’t handle money. 9. No longer knows where the bathroom is in our own home. 10. Has trouble remembering history . (this has been for some time now) 11. Can no longer dress properly half the time. Puts panties on out side of pants. 12. Some times I wake up during the night and she is just sitting on the side of the bed. 13. Puts tissue in waste can. 14. Seems able to handle toilet ok but I am but not 100% sure about this now. 15. I remind her to go to the bathroom every couple of hours. 16. Recognizes good friends. 17. Sometimes puts on shoes that do not match or just one shoe. 18. Sometimes sits and rocks. 19. Cries for no reason that I can see. 20. Has trouble remembering what to do when going to the bathroom. 21. Has trouble with all task. 22. Loves to see friends and eat out with them. But unable to take part in conversation. 23. Follows me around the house. I think I have become a security blanket. 24. Walking with very short and slow steps and always behind me. 25. Unable to make even a simply choice. 26. Can not follow the simplest of instructions or task.
I still can not believe this is happening to Kathryn. This has been the worst day of my life.
My heart weeps for you. I cannot imagine the pain you are experiencing, and yet, I know I will bear the same someday. I hope it helps to know that although we cannot change what is happening, we are here with our arms around you to comfort you.
Jim, I am so very sorry. We aren't there yet, but I can imagine how heartbreaking this is for you. As Joan said, we are here for you and arms reaching out.
Jim, Take heart, this does not mean Kathryn is going to leave you anytime soon. It is heartbreaking when they reach the stage she has reached. My heart hurts for what you are going through right now. In fact I do think that is the hardest stage of all. My husband was in that stage over 3 years ago and is still with me. It does not mean months Jim, it could still be several years. No one knows, that is what makes the Hospice placement so hard to call.
January 2011 big changes are coming to Hospice and it will be even harder to qualify.
Jim, this sounds exactly where Marilyn is at this time. I can,t believe how similar our DW symptoms are. She is 58 years old and our Dr. gives her another year and at the most 3 years. I am in tears constantly and hate this horrid disease.
Jimb...I read your list and my dw Audrey fits that list perfectly except that she knows where the bathroom is....but she cannot figure out how to flush the toilet...Her doctor told me 1-3 years, but with the fast progressing decline, I doubt it will be a year...it is hard to accept it, but I have already accepted the outcome, and grief for the part of her that disappears each day. No one can hate this disease as much as I do, but I laugh in its face and refuse to succumb to it too. It is like having a fatal heart attack in slow motion...this disease always tries to claim two victims at a time...The only victory we currently have is to only let 1 victim survive./
Jim, This is such a sad stage in your lives. However the list you provided was so much like my mom's. This does not mean your DW is at the critical end of life stage. She could be in this phase for some time. My mom was. However, having Hospice on board is a good thing as they can be of great help in many many ways as I am sure they explained during your interview. You did not mention your wife's overall health, in other words if there are other health issues such has heart disease, etc that so many of us also have to worry about.
We had Hospice for my mother, but only for 24 hours..and I wish we had had them on board so much earlier as the problems with eating and swallowing etc became more of a problem. They were so helpful and when the critical hours came I knew what I was seeing.
Keep in touch here as there are many who are where you are now, some are *s and some of us are in different stages of the journey.
Jim, my husband was in the last stages of AD for five years...he was completely bedridden and in an almost fetal position. He was young and in perfect health otherwise. So, the end may not be near at all....
After reading the list of 26 items listed by Anchor 20. I realize that my DW has at least 20 of those listed. She is now using walker, wheelchair, can't cook, use phone,can use bathroom but (never goes diecctly to bathroom, but walks into one room thru another room then into her room , then into the bathroom , sometime walks down the hallway and tries to get out the back door. I'm wondering if it's near time to contact hospice for advice for the future planning.
Selwynfarmer / Phranque, Kathryn and I both just turned 59. Kathryn on Oct. 25th and me last Friday so we are very much alike. My email address is jgb182@comcast.net if you ever want to use it.
Mimi, since Kathryn was diagnosed with ALZ (Sept 30, 2008) she has become diabetic has high blood pressure and will now be getting her 2nd D&C and biopsy for female problems. Before ALZ she never had to even take a pill at all for anything and was in great health. She has also put on a lot of weight because now she can’t go for walks anymore.
Sandi. Hospice told me that can happen, but they don’t feel that will be the case for Kathryn and to tell you the truth I don’t want her to stay in the final stage for any length of time. I hope it is very short. We talked about it early on and she said she did not want any life support in stage 7. I will honor that no matter how hard it will be.
I think the answer is I will just not take her to see any more Doctors. It seems that lately every time I take her it is bad news. That way no bad news. You know what they say, "no news is good news".
Just kidding.
I guess I knew this was coming I just didn't expected it to get here so fast. When I first read about Alzheimer’s it read like it would take 20 years before it got to this point. Now it seems to me like the deeper Kathryn gets into it the faster it advances. It’s like an unstoppable force that just keeps going faster and faster and there is nothing you can do to even slow it down. It really does seem hopeless at times. problem with this is there is no light at the end of the tunnel. We are fighting a battle we know we are going to loose and I find that very hard to except.
Anchor20---Maybe changing the focus of your battle would help make it easier to fight. I did it this way. There is no hope of winning over Alz or the other Dementias, if we mean saving our spouses, BUT we can get them through this with dignity and love, and we can survive as well. Those are WINS. It feels to me as though these monsters have a goal of total destruction of us both and all we are. As long as we live (not just survive) and carry our LOs in our hearts, Alz and friends lose.
anchor 20 and all the others my DW is also showing most of the symptoms above and like has already been said we discussed early on our wishes on death.. keeping her dignity in place is foremost even though we wish it was different it is not and we have to make the best of the hand we are dealt. stay honest in answering her questions as that will help you in the handling of her changes as well. we know we cannot win this battle but we do not have to lose the war and consume both of us. i know that as the decline becomes more rapid the end is closer. we take each day individually and enjoy it as best we can because tomorrow will bring new challenges and we must be ready for them. bless you and all the others who are fighting in the trenches. bruce d
Jim, I am so very sorry. My heart just breaks for you. I, too, went through your list and compared it to my DH. Very similar. He does use the bathroom lk (so far). He also will occasionally answer the phone. Loves to talk to our son on the phone if I make the call for him. Very sad. Every day it's a new loss.
Please accept my prayers for the well-being of both of you. In fact for all of us. None of us can afford to becomeill or dispair.
If things are as serious as the doctors believe, then I think you are smart not to put your DW through more tests etc..what good would it do? To have a D&C would mean anesthesia and that would certainly set her back as testimony of others have shown. Unless she is in pain, I think I would forgo it..
This disease is so odd.My aunt had it and when one night she wandered at 2 am, it was decided she needed to be in an assisted living facility for dementia patients. It took 3 weeks for my uncle to place her. She walked into the facility under her own steam, the next week she was in a wheel chair and the third week she died. The doctors and nurses said they had never seen Alz take over a patient in this way so quickly before. My lovely aunt was spared the ugliest part of this disease.
Jim, I am so sorry. It is so hard to watch them die and not be able to do anything but love them and keep them as comfortable as possible, trying to make their last days, weeks and months as good for them as we can, while we mourn the loss of what was while losing the love of our lives.
JimB, my dear wife (only 64) is about the same place or worse (late stage six for some time now). No one has tried to predict how much longer she will live, I don't think anyone really knows. For the most part, I'm not crying anymore, just numb.
Mimi, The problem is she is having a lot of bleeding and it really terrifies her. I talked with the doctors and Hospice about the anesthesia and they agreed there is a risk involved because Alzheimer’s can speed up after the use of an anesthesia and they would normally agree that is not worth the risk at this point but because of the effect the bleeding is having on her it is worth the risk. They believe that the emotional reaction to what is going on may be causing her Alzheimer’s to speed ahead and by stopping the bleeding it may slow down and there is even a chance there could be some improvement.
Jerry, I don't cry much but it take a lot of effort not to and even if I can control that I still can't talk and feel like my lungs will collapse it hurts so much.
That is a problem...and if that is not addressed then her blood values will begin to decline. It seems there is no easy answer. I suppose you might have to go with what the doctors recommend despite the risks of advancing the AD. Darn.
Anchor20-- My question would be: Since the D&C is necessary, why biopsy for other ? female problems? Why not go ahead with a hysteretomy and get that whole problem finshed with--no more bleeding, no more ? problems at least in that area. Shouldn't be any more anesthetic and at her age the system should be retired anyway.
Anchor20, I agree with carosi. Maybe a hysterectomy would be the best approach.
Just had my wife to the doctor today. She (the doctor) said she did not want to do any lab tests since my wife would not understand. She just decided to further reduce the metformin she is on for Diabetes.
My dh is further along than Kathryn, Anchor, except that he can usually find the bathroom (sometimes he asks me where it is) and no one has indicated that the end is near. Looking at the "stages" websites I thought we probably had another two or three years. But he is in good health except for diabetes. Thoughts are with you Anchor, these are hard choices. Good luck.
Jeanette, the idea is not to treat anything not causing symptoms or immediate problems. As long as her sugar doesn't go too high, the biggest risk is for kidney disease in about 20 years. Also, reducing the metformin cleared up her diarrhea, so she now has normal BM's in the toilet. No more mess for me to clean up. :-)
Carosi / Marsh, I asked the doctor about doing a hysterectomy and explained to him I did not want Kathryn having to deal with this again. He said he did not feel that was the right course and that he was sure he knows what is going on, that he can take care of it so it will not happen again, And he didn't want to put Kathryn though the hospital stay and the recovery required for a hysterectomy. That he felt that would do more harm than correcting it this way. Problem is I don't have enough knowledge about it to say he is wrong. I do believe he is doing what he believes is in Kathryn’s best interest and he is going to talk to her neurologist before doing it.
I want what is in Kathryn's best interest too. I hope this is.
Jim--take your doctor's advice..go the easier route and that may cure the problem..Once you do the hysterectomy, there is no reversal, and complications could also arise from that....Believe the fist part of the hippocratic oath- first do no harm.. The body knows very well how to handle bleeding. Just cut your finger, and in seconds, the body sends out its warning.....HEY GUYS, WE HAVE A LEAK!!!! Almost immediately, the white blood cells charge in to fight infection, red blood cells start to coagulate, and within a few minutes, bleeding stops and a scab forms...This is all done automatically, so there is no need for intervention...so Listen to the doctor and follow his advice unless he is totally off the wall. If you suspect he is wrong, tell him and seek a second or third opinion. They are the professionals, but occasionally you do find one who is following his own agenda.....
Jim you are in my thoughts and prayers, also tossing the rope to you. Hang on tight. We are all here for you. I also am 54, Jim was only 62. We caregivers are built to survive. It's hell, but we can do it, you can do it. You are earning your purple heart for being wounded in battle my friend. Arms around, Susan *
Anchor20, i am sorry about your wifes health issues. i tend to agree that while hospice is a very great help the first indocrination into it is quite scary and overwhelming. hospice doesnt mean an automatic death sentence right away. they can last years into hospice too. many here including myself have been withthem for a while now. although we are mid stage 7's we have also decided not to treat any non symptomatic issues. its a hard decision when our spouses need surgery for any reasons. but bleeding would more than likely be one we could not afford to wait on to deal with. i hope you find comfort in your drs decisions. best of luck. divvi