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    • CommentAuthorJan K
    • CommentTimeMay 8th 2017
    DH and I have been dealing with this disease for a very long time. (We're now in our 15th year since diagnosis.) We have talked in-depth about possible medical issues that might come up. Because of these past conversations, I thought that I was pretty well covered if decisions had to be made.

    Well, it turns out that I'm not. To make a long story short, it looks very likely that DH has cancer. We met with the surgeon last week to see what the options are. (DH had already seen a doctor, and had several scans and a biopsy. I've done numerous hours of detailed medical research online, which verified everything we have been told so far.) This first surgery would last an hour and a half, and if it is definitely cancer, an even longer and more complicated surgery would follow, with other treatment after that.

    It would seem that one's first inclination when finding out that a spouse might have cancer is to attack it with everything possible. But on the other hand, DH is an elderly person with dementia. Even the process of going through the surgery could change him immediately and irrevocably. I think we've all heard of older people, especially if they have dementia, having a permanent severe decline after surgery. I have been able to talk to DH about this, and he is more afraid of the mental decline than he is of cancer. If the surgery negatively impacts him, which seems quite likely, then whatever quality of life he currently has would be over as of that day. On the other hand, cancer that is not treated will become very difficult and painful to deal with.

    The surgeon was very dismissive about the dangers of a mental decline. He said that their medical practice operates on people with dementia all the time. When we went to DH's family doctor, though, he was very serious. He said he sees this kind of decline after surgery all the time. He said that the surgeon doesn't see what happens after the surgery. The family doctor does.

    One of the many things that terrifies me about this is that I know these caregiving years have used up any reserves that need to be available for meeting a crisis like this. For a long time, it's seemed like it was all I could do to put one foot in front of another and manage to keep food on the table and bills paid and most of the house shoveled out to a manageable level. There is nowhere left inside to reach down and get more resources for dealing with something like this. Nearly a decade and a half of caregiving has depleted me to a level I didn't think was possible to get to and still survive.

    I feel like I volunteered to give blood once, and it was okay. But before I could recover completely, there was another emergency need, so I gave blood again. But this time it wasn't okay. And this happened over and over, to the point that my face is the color of chalk, and I've been trying to crawl away and hide so I can rest and recover just a little. But someone is chasing me, screaming "We just need a little bit more! Just a little bit more! It's a matter of life or death! Come back!" But if I come back, it will be the end of me. There is no more blood I can give and not die, myself.

    Okay, I know that was way too much information, but it's how I feel. I have "given blood" over and over and over, and there is nothing left. Certainly there's nothing left to meet a need of this magnitude. But here we are.

    I would appreciate any ideas, advice, or encouragement anyone has to give. Thank you.
    I don't know what stage of dementia your Dh is in, but my feeling is that if he is in later stages I would at least get another opinion, and probably not do the surgery. Hospice is very good at taking care of pain. At least the one I used were not afraid of using medication to address pain. My heart is with you. I know the feeling of being completely burned out and I didn't have anything like that to deal with.
    How old is your husband, what stage of dementia is he in, and do you know what his wishes would be if he were able to make his own decisions? Does he have a living will or did he discuss these kind of issues with you before he became demented? How invasive and uncomfortable are these surgeries likely to be, and what is the prognosis with and without surgery? When you feel up to it, Jan, can you give us a little more information? I'm wondering if it is worth it to put him through a lot of misery when the end with Alzheimers is inevitable anyway. Is anyone talking about Hospice?
    • CommentAuthorCO2*
    • CommentTimeMay 8th 2017
    JanK. My heart goes out to you with yet another difficult decision. My mother just passed from cancer. She did not have dementia but they did a CT scan and found what "looked like cancer" with spots on the liver and lungs and a "mass" on her leg. They wanted us to do a biopsy but a nurse friend of mine advised me not to put her through this. My mother was 94. We did not and she went directly onto hospice. They controlled her pain very well and she lived life until about 2 weeks before her passing. She lived for 5 months after the diagnosis and the cause of death was sarcoma which my doctor told me is an aggressive form of cancer. She had a dNR and did not want aggressive measures. All you can do is try to go by your husband's wishes before he had dementia. I feel that performing aggressive measures if it is terminal only prolongs the agony and takes away quality of life for the time that they have left. I will be praying for you.
    • CommentAuthormyrtle*
    • CommentTimeMay 8th 2017
    Jan K, I really sympathize with all you have gone through, especially in the last year. You are really tapped out.

    I'm also shocked at the surgeon's dismissive words. Medical researchers have studied cognitive impairment in elderly people after surgery for years, although I don't know if they have established the cause or extent of it. Maybe some of our members in the medical fields can point you to current information. I'm thinking that if you want a second opinion, you should go to an oncologist who specializes in whatever kind of cancer they think your husband might have. In my experience, surgeons are just technicians.

    I think you're right to focus on your husband's quality of life. If I were in your place, I would assume there might be some cognitive loss. Some other things to consider might be:

    -- How invasive this surgery is and how long your husband would be under anesthesia? (The second surgery sounds particularly grueling.)
    -- The success rate for the proposed surgery - if it's a long shot, why subject your husband to it?
    -- What kind of the pain, discomfort, and fear/anxiety would your husband be likely to suffer as a result of the surgery?
    -- How old is your husband, what is his health condition and how advanced is his dementia?
    -- If your husband does not have the surgery, are there other treatments that would make the cancer less painful and difficult to deal with?

    Please let us know how you are doing with this decisions. I will definitely keep you in my thoughts.
    • CommentTimeMay 8th 2017 edited
    Everyone has given you valuable feedback, and I'll only add that I go along with what your husband's family doctor says. He will be your best support throughout this whole time, and he will be there with you all the way. He will be concerned about you, too, and you need an advocate. Hospice will be another source of help and comfort for you both. Keeping you in my heart and prayers.
    • CommentAuthorWolf
    • CommentTimeMay 8th 2017
    "my face is the color of chalk, and I've been trying to crawl away and hide so I can rest and recover just a little. But someone is chasing me, screaming "We just need a little bit more! Just a little bit more! It's a matter of life or death! Come back!" But if I come back, it will be the end of me. There is no more blood I can give and not die, myself"

    You're wrong. That isn't too much information. That's why the rope is here. Here. Hold on and we'll help hold you up.

    I was there. I remember what you just said because I was there. I know this place. You're not going to die. But this is rough so hold on.
    • CommentAuthorMim
    • CommentTimeMay 8th 2017
    Well, Jan timely your post is. I am facing this with Dan. He is 82, probably about early late stage (or maybe late middle stage, I really can't label it!). He has bladder cancer, has had two surgeries, the first one removed a kidney stone & scraped bladder tissue for a biopsy. The second surgery was to scrape the bladder of as much cancer as could be seen. It is an aggressive cancer, has already entered the muscle around the bladder. He has been scheduled 3 times for a PT scan, has had all three scans canceled due to high sugar readings (not sure what is going on there). Well, today I called & canceled further appointments, opted out of radiation treatments. It has not been an easy decision, I have felt so torn....pretty much like a real louse. Intellectually, I know it's the right thing to do, but the heart is another matter :(

    At this point, he seems comfortable enough as far as we can tell...he doesn't seem to register pain or discomfort if there is any. He's eating, is still mobile (way too mobile, almost 24 hours a day of constant pacing & walking the halls!). It isn't much of a life for him, but he doesn't complain. I just want him to be able to see the sunshine, enjoy a Wendy's Frosty, pet a therapy dog for as long as he can. Whatever quality of life in a facility he has, let him have it while he can. He knows my face, although he refers to me as his sister many times, he smiles at almost everybody (although he thinks everyone else if goofy!). I just want him to enter his next transition as comfortably as possible...I have talked to the nursing home about palliative care, hospice, etc., as he progresses, I will be with him more & more. He's 20 miles away, so I'm not there every day, maybe only about twice a week. The saving grace in that is that he doesn't have any concept of time or season.

    The urologist sees & treats urinary issues....the radiologist treats cancers. They don't treat or see the whole person or situation. They are called to heal. We are called to deal with this the best way we can, with love, with compassion, with common sense (difficult when emotions get in the way) & kindness. Helping them as they travel the road to their next destination (wherever you believe that is) is probably the kindest thing we can do for them. Either way, Dan is terminal... cancer or Alzheimers. It's a very hard concept to absorb for me, but this is what happens in life.

    I hope I haven't rambled too much, I tend to do that sometimes. Just realize you are not alone in this particular situation, I am right there with you.
    • CommentTimeMay 8th 2017
    A few years ago we had a discussion on anesthetics - which were absolutely horrible and those that were not as bad. Most anesthetics are designed to cause memory loss - they don't want you to remember the surgery. Problem is for some the memory loss continues. I know a lady who has short term memory problems from her colonoscopy where they used Versed. When I had my hysterectomy, colonoscopy and shoulder surgery I told the anesthesiologist which ones I did not want used and they laughed at me when I gave the reason.The one for the shoulder surgery was the worst - he actually made fun of me.

    The other problem, especially with long surgeries, is the brain cools down which they say kills brain cells. These can play havoc with an already compromised brain like our spouses have. These are two concerns with dementia and anesthetics I have read about.

    If my husband got cancer I would not treat it. We talked about it early on and we both agreed why prolong things, especially if treatment would cause a mental decline. His doctor knows it which is why they probably don't do a real good physical on him. In fact, I pray something will take him before the last stages of Alzheimer's. I was so happy my sister did not have to endure the end stages of VaD, and pray the same for my husband. I even doubt if I was diagnosed with cancer again I would not seek treatment.

    Tough place to be, but like you said - you are exhausted, have no more to give.
    • CommentAuthorMoon*
    • CommentTimeMay 8th 2017
    Jan K,

    I am so sorry you have this additional problem to face. I don't know what type of anesthesia my husband had, but over a five year period (64-69 yrs. old)
    he had an abdominal surgery, as well as several procedures to expand his esophagus. After each, I noticed extreme losses in memory and vocabulary and
    other declines in his daily routines. Also,shortly after two of the procedures he had a seizure.

    I will keep you in my prayers. My only suggestion is to make the decision you would want your husband to make if your roles were reversed.
    • CommentAuthorpaulc
    • CommentTimeMay 9th 2017
    Surgeons generally suggest surgery. They tend to be people with personalities that bias them towards action (which is why they became surgeons).

    When my father was 82 he was diagnosed with CHF. The doctor who performed the angiogram recommended medication only treatment to regulate heart beat. He felt that angioplasty would either kill my father or leave him disabled due to kidney problems (the dye used in angiogram and angioplasty is hard on the kidneys) and his being fat (which made the process take longer than average, meaning more dye is used). Another option was surgery, opening the veins and cleaning them out. He felt that this also was likely to kill my father or leave him disabled plus there was no evidence that this would extend my father's life. This doctor pointed out that my father lived longer than most people who shared his birth year and it was impossible to state how much longer he would live.

    This doctor warned us that the surgeon would recommend the surgery. He stated that surgeons want to take action and it is just their attitude, nothing nefarious.

    Some anesthetics are recommended for people with dementia to lessen the odds of additional cognitive loss.

    We went with the medicine based approach. My father lived years longer than predicted. I didn't realize it then but he was in early stages of dementia so anything which would have caused more cognitive loss would have lowered his quality of life.
    • CommentAuthorLindylou
    • CommentTimeMay 10th 2017
    Jan K

    I’ve spent the last day thinking about you, thinking about what to say. Because I don’t know you well. But I do know this disease. And I feel I do know the person I married.

    I want you to think about the person you married and the person you stood beside when you took your vows. I want you to think about what you were promising each other.

    The man you married, at the moment he married you, wanted the absolute best for you. You saw it in his eyes. You saw it in the way he held you. He can’t think it now because of this disease called dementia. He certainly can’t say it to you at this point. But one thing is for sure, he did not want himself or this disease called dementia to suck the life out of you. He did not.

    We are all engaged in a war we cannot win. If we let it, dementia will destroy two just as easily as one. Please, Jan, do not let that happen.

    We often think what would our partner want regarding the decisions we make regarding care. That I have felt is somewhat simplistic because the additional question needs to be asked - what would our partner want for us. And a third question also needs to be asked, what do we ourselves need and want because we are an important part of this equation.

    I would echo the others who have suggested you talk with people from hospice. They are trained to see the greater picture. The surgeon not so much. And you need that information in crafting a way forward for yourself and your husband. And whatever your decision, know, Jan, that many people on this website have you in their thoughts and prayers.
    • CommentAuthorBev*
    • CommentTimeMay 10th 2017
    I've gone through this with my husband. I would not let him have the surgery if I were you. As most of the others here have said, seek out hospice help and listen to your primary care doctor, he knows your husband best. When my husband had heart surgery he awoke from the surgery completely disoriented, hallucinating, etc. I believe it accelerated the dementia. Of course, he really had to have that surgery then and we didn't yet have the diagnosis of dementia but something was going on. At this later stage in your husband's case, again, I would not do it.
    • CommentAuthorJan K
    • CommentTimeMay 10th 2017
    Thank you for all the very kind and thoughtful responses.

    DH and I were able to talk about this a little, and I feel like he does understand what the choices are. He does not want to risk the surgery and possibly lose what mental ability he has left. Very shortly after we talked, he didn't remember the medical issue, the trip to the surgeon and the family doctor, or our discussion about all of it. The good thing about that is that he certainly doesn't feel any fear about what might happen in the future.

    The fact that I was able to ask him what he wanted does help. And the fact that he didn't remember any of it means that he's already declining fast enough. I'm finding some peace about the decision for him not to have surgery. He's already dealing with several other physical issues besides dementia, and the prognosis doesn't look good no matter which decision we make. But without the surgery, he can maintain what little quality of life he has now.

    I want you all to know how much your kind words helped. I appreciate it more than I can possibly say.