I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It explains my recent absence from blog writing and the message boards. Thank you in advance for your understanding,
Hi Joan--Larry's long, 14-year downward spiral was like your experiences in some ways…he would have some really distressing physical symptoms--he also had a heart rate that they couldn't get down for a while, and he had a really severe pneumonia--but I used to say he was like the Energizer Bunny. He just took a licking and kept on ticking. He was hospitalized for treatment of both the rapid heart rate and the pneumonia. After the bout with pneumonia he spent six weeks in a nursing home for Rehab, and was just utterly miserable. He just could not settle in anywhere else but home, and as you all know, I'm 25 years younger and a long-time RN…so home he came. The day finally came when he himself still had enough mental capacity left to say, "enough", and to tell his doctor that he just wanted to stay home with me and have palliative care only…"just do it the old-fashioned way"…was the way he described his home care treatment plan. (Or maybe I should say, the lack of one.) He had put that in writing years before, when we married and drew up our advance directives. So I knew what he wanted anyway, and between his written living will and what he was telling his doctors (even though he was clearly demented), they understood his wishes and we did go to palliative care only. We were pretty sure something was going on with his bladder or prostate, but the doctor and I decided not to do any testing, as Larry had made it clear he just wanted to be left alone and not have any medical interventions. So he urinated quite frequently, and had one episode of really bloody urine that scared me and the aide to death…but he had no pain or problems urinating other than that it was often…so we let it all continue onwards with no diagnostic workup. I tried one more time to place him in a lovely ALF, but again, you would have thought he was in Alcatraz, he was so unhappy. With a much younger wife who was a nurse, why should he have to be there? So home he came again, with full-time aides again. And he got worse and worse…very gradually…and I got more and more tired and isolated…well, you all know the rest of the story…how I joined forces with my family and moved out-of-state in an effort to survive myself and to get Larry taken care of.
The point of this too-long post, I guess, is that we on this forum understand trauma, and we understand what years of crazy caregiving can do to the patient and the spouse. It's a nightmare for both. So Joan, for Heaven's sake, there's no need to apologize for not posting a blog, or for not sharing every smallest detail of your and Sid's lives. We do get it. We can very well (unfortunately) fill in the blanks for ourselves, because we've been there…or are still there now, in the throes of battling the Alzheimers. "Trauma" is not a descriptive enough word…I don't think there is a word bad enough to describe it…but "trauma" will have to do, I guess.
I know we can never totally understand what another person is going through, and we're not supposed to say that we do. But in all honesty, Joan, I think those of us here on these forums "get it" and understand about as much as it's possible to do. Arms around. You hang in there, girl. It is unbelievable how much you contribute to others when you are going through what you are going through. Huge, humongous hugs…and love to you and Sid.
Joan, I am so sorry that you and Sid have had such a traumatic turn of events. I think that almost everyone on this site can identify with your conflicting feelings of wanting this to be over for Sid’s sake, but also not wanting to lose his physical presence in your life. You are right, though, that it does not matter what you want or do not want, since you have no control over it. To me, that is the ultimate lesson of this disease - that there is nothing under the sun that we can do about it.
Please do not worry about your decision not to post all the details of Sid’s condition. Those of us who write under screen names are well aware that your use of your true name exposes you to violations of your privacy. And we don’t need to know the details, anyway. We are here for you.
Joan, thank you for your post. You share as much or as little as you feel comfortable. I know as the end approaches it is very scary. My DH heart was okay. It was the lungs that gave out and filled with fluid. It sounds like you have a great doctor and that is a very good thing, and it sounds like you will not have to move him anymore and that too is a blessing. just try to breathe and take each day as it comes. It will happen as it is supposed to and all will be well. God bless
I just want to say that this website has been such a help to me. It is here that we can be vulnerable and authentic. For those of us who are trying to figure out how to live with total uncertainty, no ability to plan even one day in advance, and the sheer horror of uncontrollable disease, it is a lifesaver. I am so sorry that Sid is having these problems and that you are having to witness them. My DH is always begging me to take him home, to come get him out of jail and on and on it goes. I think that the severe stress of watching our spouses disintegrate before our very eyes changes us as well. No living being was designed to watch another person die. It is a burden that reshapes us and sometimes I do not even recognize myself in the mirror. My legs feel like logs and I know my heart is breaking. It is so difficult to explain this to anyone and such a comfort to know that the people on this website are genuine, caring and have total empathy for each other. My heart goes out to you and even though we have never met I feel a kinship with the people on here. I cannot imagine the end for my husband because I cannot envision my life without him and I know you feel the same way. Many thanks to you for sharing your honest and gut feelings with us. I have learned to appreciate life through this harrowing experience and to welcome the freedom that will set my husband free when he passes. Again...thank you.
Joan - there is so much that could be said, and yet, there is really nothing much to say except that we are here and understand. It was well that you did not let him be hospitalized, I felt the same way. Lots of tubes, people, stuff going on, noise, poking, it would be terrifying. Everything will happen in its own time. The best thing you can do for you both is to keep him as calm, comfortable and loved as possible. Blessings. Betty
Joan, you did everything correct. You didn't write about what was going on both because you were too busy/tired and because you weren't ready to share. You need to process these traumatic events before you can share them with us. And you were right about Sid not going to the hospital. I had a much more minor situation with my wife on Saturday and wanted to avoid the trauma of the ER for her, her ALF was able to care for her problems (fractured ankle).
Joan, just as everyone else here who posts, you can certainly share as much or as little as you feel you can manage. We certainly all understand. There are days when I feel as if dementia is my full time job and I'm like a reporter or diagnostician and it's just too much. We all have to distance ourselves at one time or another just to survive. Your number one priority is Sid and yourself, you never have to apologize to us -- we get it. Take care of yourself.
Joang, strength and hugs to you. Thank you for sharing what you could. You have led the way for so many of us and we are so lucky and grateful to have this place you provide to help each other through. Just do whatever you can to take care of yourself thru this and know are here for you as you have been for us. Retreating from all that is extraneous has been necessary for me at times during this journey, and however we handle it is okay. You have our full support.
Joan ........Just want to let you know that I keep reading your blogs and thinking about what an amazing little lady you are. What a lucky guy Sid was to have had you for his wife all those years.......And he still has you.
Ah, Georgie, thank you. For 45 years, Sid has always told anyone who would listen that I was the best thing that ever happened to him. And for those same 45 years, I would tell anyone who would listen that I married the love of my life. As our time together nears the end, I'm trying to focus on how lucky we were to have found each other, but " it ain't easy". We desperately wanted more time. The years raced by too fast. Too fast. I am only 66 years old. I selfishly wanted 20 more good years. Now all I can wish for is for him to pass away peacefully in my arms. Sometimes life just sucks.
To prevent anyone from the NH to send Sid to the hospital, do you have large DNR signs posted in his room? This should be something visible not only to the staff but also to any paramedics called to the NH. The paramedics are not going to ask about DNR (they don't have the time), it needs to be someplace obvious that they can't miss.
To me, posting large DNR signs in a person's room would be dehumanizing. Anyhow, it sounds like what was violated here was the "no hospitalization" instruction, not the DNR order, so if you wanted to get that message across, too, you'd also have to post large signs that say "No Hospitalization." The room would be full of warning signs.
If someone is enrolled in the Hospice program, shouldn't the unit nurses should know that? And if they don't, they should check the patient's orders before calling an ambulance. This seems like a classic example of nurses delegating their authority to EMTs, who they know will shoot first and ask questions later.
It is hard enough to deal with the news that one's spouse has reached a point that is close to the end, without also having to deal with the medical dramatics brought on by the staff's failing to check the patient's orders.
I agree that all staff should know about "no hospitalization" or "no DNR" but you can't count on any person knowing it at any time, especially during an emergency. In an emergency no one has time to check records and staff should not be depending on their own memories. In Joan's case it seems the person should have had time to check on the "no hospitalization" request.
And that brings up another issue. If someone is on hospice, and the person is sent to the hospital, will insurance pay.
Another wrinkle that comes up is when staff know perfectly well that the patient is not supposed to have CPR, or be sent to the hospital…and they do it anyway. It is a big ethical issue for some staff. Even doctors will do this, depending on who is on call or who is in the house at the time and runs up to the floor to help. Sometimes it's a situation where the staff member loves the patient…kind of crosses the line professionally…is a little over-involved. ("She reminds me so much of my grandma…my dad…my Aunt Tilley," etc.) They just can't in their hearts let a patient go, even though most of us would think their behavior inappropriate.
Real life issues in the modern morass of medical care. Just saying.
Yes, it is a big ethical issue -- medical staff who know perfectly well that a patient is not supposed to have CPR and do it anyway are acting unethically. They should be fired by their employer and disciplined by whatever state board granted their license. If their own moral beliefs conflict with their profession's code of conduct and their patients' decisions, they are working in the wrong place. As for people who are not motivated by a sense of morality, but by some sentimental claptrap, I don't think "unethical" or "inappropriate" are strong enough adjectives.
When I had to complete my husband's advance directives, I asked a nurse for advice about some of the procedures and also thought a lot about what my husband had said to me and what his core beliefs were when he was of sound mind. That process was emotionally very difficult and it continues to be difficult to revisit these directives (which I am required to do) at each quarterly Care Plan meeting. I do not find it acceptable that my carefully thought-out choices would be rejected because whatever staff member who is on duty at the time has different moral beliefs or because my husband reminds them of their uncle.
Paulc,in response to your question about hospital and whether insurance will pay if on hospice--my husband was on hospice and they sent him to the hospital because he needed more medication management than they could provide at the hospice facility. When a person is hospitalized on hospice they are technically removed from hospice status while hospitalized. When I knew my husband was about to be discharged I had hospice come and re- enroll him so he would be on hospice when he was discharged. Yes insurance will pay because they are technically not on hospice while in the hospital. When my husband was in long term care it was their policy to take him to the ER if he fell and hit his head even tho he was on hospice. I did not have the energy at that time to fight that policy even tho I hated what going to the ER did to him, causing more confusion and unnecessary CT scans and x-Rays.
Sid is not on Hospice, so that doesn't factor in here at all.
I have a close friend who worked at Hospice for years ( non medical capacity). She strongly recommended signs above the bed that specified a DNR and no hospitalization. I have resisted doing so because I agree with Myrtle. I don't know if "dehumanizing" is the word for it, but whatever it is, I'm not comfortable with it.
No matter what, you have to be right on top of the nurses and aides all of the time that you can. Lately I have been making sure that I am there during the 3 o'clock shift change, and I "remind" the next nurse about the "no hospitalization", and that I am to be called if there is any change in his condition.
When I heard who was coming on at 3 today, I left before speaking to him. He is highly competent, and fully aware of my wishes.
If I ever found out that a health care worker went against my wishes because they conflicted with his/her personal beliefs, "Hell would hath no fury" like Joan at that point.
A note of interest - in the ALF next door to me there are name plates on the doors to the residents' rooms. If there is a round red sticker next to the name, it means that person has a DNR. I thought it was a good idea - private and unobtrusive.
Joan, I agree that "dehumanizing" is not the right word. I don't think "disrespectful" is correct, either, since that implies intention, and someone who posts a DNR sign does not intend to be disrespectful. Quite the opposite, in fact. Maybe the most accurate word would be "undignified."
For all the help you have given so many of us, please don't feel in the least bit apologetic for not blogging. You are doing everything you need to do, and that is something we've all learned here is the best thing to do. I so related to your post about your dear Sid. I am so glad you intervened and did not allow them to make him undergo a disruptive, unnecessary and disturbing hospitalization.
Your comment about selfishly wanting to keep him alive cut right through to my heart. I understand that so well.
Somewhere I read about a couple who either had or planned to have the letters "DNR" tattooed on their chests on large letters. Maybe that's what you have to do to prevent these rogue health care workers from messing with your body.
I've read that doctors tattoo DNR under their armpits. They know the horrors of dying on life support and don't want it for themselves. I don't know why the armpit and I hope that is a place that medical staff check.
As a doctor I have never heard of tattooing DNR "under their armpits". I have heard lots of discussion about tatooing it on their chests, but I don't know anyone who actually did it.
My patients used to sometimes write on themselves with a magic marker before surgery. Things like:" Do not amputate this leg." (On the good leg) and then they would feel more confident that the OR team would amputate the correct limb. Another guy had a total knee replacement done, and he did the same thing--said he liked his doctor well enough, but had heard too many horror stories…so drew an arrow down his thighs pointing to his knees: "Good knee. Do not touch." And, "Bad knee. Operate here." I don't even want to speculate about how it messed up the sterile fields in the OR. I would think the team would have to wash the marker off with Betadine or something before proceeding. (That's one thing I've never done--never worked in the OR.)
There appears to be no limit on the amount of sorrow we spouses are expected to endure. Joan, whatever works for you to help get you through this is fine. I will pray for you and Sid.
reading your most recent blog about the happenings with Sid and your decision to follow your own Dr's advice for his care you are to be commended. I know first hand that making that decision was in his best interests and not your personal feelings. At some point during the AD experience we caregivers had to make that decision, Thinking of ourselves or our loved one's best interest. It is a very hard thing to do but when you have loved someone for a long time and you know what their personal feeling are about their future you just know what the right decision is. Removing your feelings from this decision is hard but necessary and if the tables were turned and it was you and not them who had to make it you know they would make the same decision that you made.
I liked the part where you said you were "livid" that they wanted to ship him out to the hospital again. I experienced that very sentiment. I also told everyone that I wanted comfort measures only. While on my way to visit him one day I got a call from the nursing home that they had, once again, shipped hm out to the hospital. He was agitated and they asked him if he had chest pain. He said yes. Power of suggestion worked for him every time! I got there 5 minutes later and marched into the admnistrator's office where I called the ER (on his phone) and informed the attending Physician that he did NOT have permission to treat him and to send him back. Guess what! They did! I was livid to say the least. I was ready to spit nails!!! I told the ER doc that he had zero history of cardiac issues and even if he WAS having an acute MI...he would NOT take a trip to the cath lab and would NOT be treated other than comfort measures. He prayed many times for a heart attack or a massive stroke to take him before he got to far lost into the dark side of AD. I was litterally worn out just trying to protect his wishes as he had them stated in his living will many years before! Needless to say, they NEVER sent him out again without a full discussion with me. Good for you taking your job as his advocate very seriously!
Dear Joan. Tears were streaming down my face reading your post. You have such a gift of being able to write so well from your heart.
As a former ER nurse, I shuddered that they were going to send Sid to the ER. Thankfully they phoned you before he was shipped off. As you, and others so clearly stated, people with dementia/Alzheimers can really suffer going to hospital. Way too overwhelming, busy, and confusing.
So good for you Joan. You post when you can and know every time you do you give us a precious gift. When you are absent, it is an indication to me you are prioritizing well and doing the very best you can for your health and that of Sid.
We are here together and doing the very best we can each and every moment. Much love to all.
Just a thought on the posting of DNR signs in the room or on the door....maybe it's harder for us because it really reinforces the reality & finality of our loved ones passing on, even though we know what's coming.
Dear Joan, I am sorry for what you have been going through with Sid. I found your website seven years ago and it has been a lifeline for me. I appreciate and am amazed by all that you share.